If you’ve ever sat through an assessment for NHS Continuing Healthcare funding on behalf of a relative, you may well have found yourself arguing with assessors about the difference between a healthcare need and a social care need.

No doubt you’ve also been told that your relatives needs are just social care needs, and that they aren’t ‘eligible’ for any funding.

But what exactly is the difference between a healthcare need and a social care need?

Errors in defining care needs – and defining them as either healthcare or social care are the cause of most Continuing Healthcare disputes and appeals.

People in full time care who clearly require at least some degree of nursing care – and even those who require 24-hour nursing care and who therefore have significant nursing needs – seem to be routinely told their needs are merely social care needs.

The reason for this? It means the NHS can relinquish responsibility for providing (and funding) care. The person will instead be means tested and told to pay for their care. And yet, in the UK, healthcare and nursing care are free.

Families understandably find it exasperating and end up being forced into an exhausting appeal process. What’s worse, the appeal process is conducted and overseen by the very NHS people who have denied the funding in the first place – and who hold the purse strings.

“2.1 Whilst there is not a legal definition of a healthcare need (in the context of NHS continuing healthcare), in general terms it can be said that such a need is one related to the treatment, control or prevention of a disease, illness, injury or disability, and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional).

2.2 In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining
independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation.

2.3 Social care needs are directly related to the type of welfare services that LAs have a duty or power to provide. These include, but are not limited to: social work services; advice; support; practical assistance in the home; assistance with equipment and home adaptations; visiting and sitting services; provision of meals; facilities for occupational, social, cultural and recreational activities outside the home; assistance to take advantage of educational facilities; and assistance in finding accommodation (e.g. a care home), etc….”

It’s clear that someone who needs full time nursing care does not simply need social care services from a local authority. In addition, it is illegal for a local authority to take on responsibility for providing care to someone who should be receiving care from the NHS.

And yet thousands of people with significant healthcare and nursing care needs are currently paying for every penny of that care – because the NHS has passed responsibility for care to the local authority, which in turn puts the person needing care through means testing.

So if you find yourself in a Continuing Healthcare assessment, and your relative has healthcare and nursing care needs, ask the assessors how exactly they justify saying those needs are social care needs.

Unless nursing care services are “merely incidental or ancillary to the provision of accommodation… and of a nature that an authority whose primary responsibility is to provide social services can be expected to provide” [Coughlan], a person’s care is the responsibility of the NHS – and it should be fully funded by the NHS. Any attempt by a local authority to take responsibility for such care (and certainly if a local authority starts charging top-ups for such care), is likely to be illegal.

In an NHS Continuing Healthcare assessment, make sure all needs are taken into account – regardless of whether they’re health needs or social care needs. In that way you’ll have a full picture of needs.

Keep in mind also that if you’re successful in getting NHS Continuing Healthcare funding, this will cover both health AND social care needs.

Have you come up against this problem in assessments – where health needs are described as social care needs, and for that reason you’re denied Continuing Healthcare funding?

200 Comments

It appears that the NHS does not have sole responsibility for all nursing care. Local authorities can provide nursing services under section 21 of the National Assistance Act 1948 & so long as those nursing services are capable of being properly classified as part of the social services responsibility. This is all a very grey area & one which assessors constantly hide behind.

So what does this mean, that the NHS Continuing Healthcare can push you over to social care? Is there any more info on this so when we next have a review we are ready with an answer? I thought that the Local Authority could only take on a very minimal amount of nursing needs? So how would we get to them if they try to hide behind Sec 21?

I have been trying to find out more on this Barry. The only thing that I can find is the Coughlan Case that states about nursing being incidental or ancillary to the accommodation, but I am struggling to get more clear definitions.

I have known of people with a combination of Severe & high scores not being awarded funding. In our case my mum in law had 5 High scores & 5 Moderate plus the remainder Low – that was in their opinion, not ours – we felt she had at least 2 Severe, & 4 High plus 5 Moderate. She still was not awarded funding. They use the guidelines when it suits them unfortunately.

Jenine8 months ago

4 Highs, 3 Moderate ( although 2 were actually Severe but not put in right domain ) but assessor kept them as High and only 2 characteristics , intensity and complexity. Varies by county assessor etc. Sound as though Glynis your relative did not have a need for any social care by the number of domains and level. Speechless as to why ineligible.

Glynis Evans8 months ago

I agree Jenine. The fact that she rapidly went down hill after June last year & was discharged from hospital as end of life/palliative care & then passed away in March should have been proof enough that she had a rapidly deteriorating condition & a primary health need. We should have decision from Local Appeals panel in 2 weeks time, but I am not holding my breath.

barry7 months ago

At the last assessment, for Behaviour we said Severe and the assessor said High, as there is no evidence. I explained there is no evidence because the need is well managed. When i got a copy of the assessment she down scored saying the need is well managed. I’m sure this is not right, i.e. no evidence. What i was wanting to know is there anything in the National Framework about these two sujects so this time i can argue the point with her. Many thanks. I love this site – it so helpfull. Barry

Angela Sherman7 months ago

Thanks for your kind words about the website, Barry. See National Framework pages 21, 22, 61 and 62.

Glynis Evans7 months ago

Well, it appears that the grading in the various domains makes little difference to the outcome. At local appeal panel they upgraded one of our relatives scores to Severe, giving her 1 Severe, 4 Highs & 5 Moderates. She was still considered not eligible. They also agreed that she exceeded the needs that Pamela Coughlan had. It apparently all hinges on if the claimant has a primary health need – based on key indicators such as complexity, unpredictability etc. It appears that these are the main areas that you need to concentrate on. This is what came out of the Coughlan judgement & this is what they use as their benchmark.

Unfortunately the local authority can also provide some aspects of “nursing” care, It also depends on the quantity (intensity) & quality (complexity) of that nursing care. We had an advocate representing us who has fought & won many NHS Continuing Healthcare cases & he has said that it really comes down to proving if the claimant has a a primary health need.

Hi Glynis … I see you are still fighting. We are waiting for date of Local Appeal – at least we retain funding up to the time of the LA. In our CCG area the key determinants of eligibility – as you say – are intensity/unpredictability/complexity/nature … all of which can be very subjective. Primary Health Need is equally subjective. In our area ‘Behaviour’ seems to be a highly significant element. If the individual is noisy/disruptive/agressive they are usually considered eligible …. my mother is unfortunately (in this regard) quiet and ‘undemanding’ and therefore not seen as a ‘problem’ although in my opinion her ‘needs’ are equal to those of folk who are more outwardly demanding.

Glynis Evans7 months ago

I couldn’t agree more Steve. We put together a comprehensive document from information researched, but it appears that nothing else mattered apart from the key indicators of a Primary Health need. We thought a Severe & a number of High grades would be enough, but that is not the case. My mother in law was the same most of the time, and when she was “challenging”, it was never recorded. This CCG was the same. It totally ignored the fact that that she had advanced heart & renal failure, which was the reason for her 24 hour nursing care & kept saying that her dementia was the same as any other nursing home resident. To be honest Steve, I believe they pick & choose depending on the claimant & their symptoms – manipulating the criteria to ensure non-eligibility, It is not a fight for the funding now she has passed, but the principal. Good luck with the LAP, make sure that you see a copy of the needs portrait & all other relevant paperwork that they will be using for their decision.

Chris-G7 months ago

Glynis, whilst comparing your case to others within the home, they have broken the rules. Patient centered assessment is required. As such, if acourt was judging, they have opened the door to you making a direct comparison with Coughlans needs. Of you get me.

This is where lines are blurred, deliberately. If someone has a social worker and they discover that person self harming, or lying on the floor breathless from COPD, would the social worker call their own organisation’s nurse? Of course not. So why when the same patients require after care for exactly what the NHS was called out to provide, does that aftercare fall within the remit of a council? Providing lifestyle advice in matters of daily living as a council nurse could provide, is very different to total nursing care. The intensity, complexity etc. do not exist in law as such. They are constructs with no clearly defined margins. At least, that is how we have fought the criteria.

Glynis Evans7 months ago

The Primary Health need derived from the Coughlan case (Or to put it correctly primarily a health need) & then the intensity, complexity etc became the measurements for that primary health need – so they have indirectly come from the Coughlan case. We have points/definitions for each of those indicators & that is how we will need to move forward. Even having a rapidly deteriorating condition, being confirmed as end of life/palliative care does not seem to be enough. It all appears to hinge on these indicators & the advocate confirmed this. At the end of the Decision Support Tool this is what they use to determine eligibility.

barry6 months ago

Hi All, would anybody be able to say what Continuing Healthcare mean by Complexity and Intensity with some brief example’s as I have a review coming up and we will no doubt go through the usual battle for funding with my wife who is registered as” end of life” Alzheimer’s. I find the Skin is one of the hardest to look after to avoid pressure sores. She is now in her 10th year. Many thanks.

Hi Barry
Intensity relates to both the extent & severity of the individual’s needs & to the support required to meet them – including the need for sustained, on-going care. This may refer to a chronic condition, which requires a type & level of care to manage or maintain health. The determination of this must be based on the assessment of NEED & not the service. Reference to whether service is provided by a nurse or carer is of very little relevance. For a local authority to fund healthcare, the primary assessed need must be for accommodation and/or social care. This was not the claimant’s primary need. Questions that may help consider this include:
• How severe are the claimant’s needs? How often is intervention required? For how long is each intervention required? How many care workers are required at any one time to meet this need?
Complexity is about how the individual’s needs present & interact, plus the level of skill/knowledge required to monitor the symptoms, treat the condition and/or manage the care.
An individual’s needs may be complex as a result of the interaction of multiple symptoms or secondary effects. This can also refer to the extent of the intervention required for a single condition. Multiple conditions, treatments and/or symptoms such as those of the claimant, may require urgent or timed intervention. If this were not provided, then the individual would be at significant risk. Questions that may help consider this include:
• How difficult is it to manage the needs? How problematic is it to alleviate the needs & symptoms? Does the level of support have to change at short notice? Is the condition unstable? What happens if a need isn’t addressed when it arises? What level of monitoring/review is required? Are the needs interrelated or do they impact on each other to make the needs even more difficult to address?

barry6 months ago

Hi Glynis, Would you know if being incontinent would qualify as being unpredictable, as you cannot predict when they are going to go? Many Thanks.

Glynis Evans6 months ago

With regards to incontinence, I believe that relates more to intensity as you need at least 2 carers at frequent intervals to deal with this care need. If patient is bedbound, It also involves things like washing, use barrier creams & emolients, manual lifting/turning which can be risky if patient is frail or has contractures, they must ensure there are no creases to bed clothes or sheets to ensure prevention of bed sores, they must be qualified in manual handling. They then must dispose of things in accordance with H&S regulations. With regards to unpredctability, I would say that only really applies if the patient is susceptible to frequent bowel changes (ie diarrohea etc) or has a catheter inserted etc – however this may come more under complexity. Hope that helps

barry5 months ago

Firstly, can I thank you for your kind help, was wanting to know what domain I would put hydration/dehydration under? The nutritionist said try to get her to drink 1700ml of fluid a day if possible.

barry5 months ago

What domains would you say were likely to be UNPREDICTABLE?

barry5 months ago

Would anyone know if this statement is factual, only the Assessors seem to keep going on about the four key indicators
“The major cause for concern in terms of the revised policy can be found on page 17, where despite the changes under the heading of key considerations it is suggested that the very issues of, complexity, unpredictability or intensity, which bear no relation to the Coughlan Judgement, especially to patients (b), and (c) ruled to be entitled at law to free care, are still relevant in deciding entitlement to NHS Continuing Care.
“In fact, Lord Justice Charles in ‘Grogan’ struck down criteria based on ‘complexity, unpredictability or intensity ‘, saying ‘The criteria is fatally flawed”.

“I submit that the medical condition of my wife is, sadly, identical to patients (2) and (3) who were ruled to be entitled at law to NHS continuing care by the Court of Appeal. “Lord Woolf in referring to the illegal assessments in Coughlan referred specifically to patient (2), as “immobile, unable to communicate and doubly incontinent”.

As far as I was concerned the NF is only a guide and does not supersede the law.

My wife is in the late stages of Alzheimers non-weight bearing, doubly in continent, no cognition, can’t communicate, on a nebulizer three times a day for breathing

Good evening. My mother has had NHS Continuing Healthcare (CHC) for 2 years. Her needs have increased , behaviour worse than when original CHC granted. Review today, no feedback and spuriously have told me she will need full assessment and return to panel. I thought that the review was categorically not about eligibility. I have requested a copy of the review from the ageist, dismissive and offensive nurse assessor. I am struggling to understand why I have to go back to panel. It is all about taking back funding.

Hi my wife is in her 11th year with Alzheimers and we are due a CHC revue, We have always scored in cognition Severe , this time I am gong to score in Drug Therapy Severe for the reason the last part of the wording does not relate to pain or peg feeding tubes or diabetes meds at all but to a simple “risk of relapse due to the risk of no concordance
The last wording also being prefaced with the “OR” making any of the clause’s standalone clauses.
If there is not a risk of relapse then why is the medication still being administered? Administering unnecessary meds is assault. I doubt that any of us would get away with covertly medicating anyone if we tried it. The NHS can’t have it both ways.
Your comments would be very much appreciated

Hi Barry – Non-Concordance or no-compliance to me means that the person would have to be refusing to take their medication or that it is difficult to administer it so that it has to be delivered via specially trained trained doctor’s or nurses , multiple staff or even perhaps by a permanent cannula & by syringe. They will still try & get out of it however you fight it. They are masters of this. My mum in law was diagnosed end of life with 24 hour nursing, but she was still not deemed eligible. The new National Framework update that came into force on the 1st October, now states that anyone diagnosed as end of life is entitled to CHC funding. Unfortunately anyone who was diagnosed end of life but had a DST carried out before or passed away before this date is not automatically entitled. It’s a complete & utter shambles. But Good luck with your fight for justice, but take care it does not have a serious impact on your health, as it has done with us :0(

Hi Glynis My reading of the new NF is different to yours … Para 216 ‘….not everyone at the end of their life will be eligible for, or require, NHS Continuing Healthcare …’ I would love you to prove me wrong, please !

Glynis Evans2 months ago

Hi Stephen – New guidelines state – Pg (I think it s Page 63) 218. “The intention of the Fast Track Pathway is that it should identify individuals who need to access NHS Continuing Healthcare quickly, with minimum delay, and with no requirement to complete a Decision Support Tool (DST). Therefore, the completed Fast Track Pathway Tool, with clear reasons why the individual fulfills the criteria and which clearly evidences that an individual is both rapidly deteriorating and may be entering terminal phase, is in itself sufficient to establish eligibility”. Unfortunately there is so much ambiguity as one section contradicts another section, it leaves it open to multiple interpretation. We were told that had my mum-in-law been assessed after the new regulations, then this would have been taken into account – but who knows, they could just of easily said something different. They are a law unto themselves….

Stephen Reeve2 months ago

Hi Glynis Thanks for your reply & wish you very best of luck with the IRP. A friend recently attended an IRP and was told that ‘sleepy folks’ are not entitled to CHC. They are not allowed to make such sweeping generalisations. I suspect my Para 216 trumps your 218 but hope for both our sakes that I am wrong. Mum is at EOL (whatever that means !) but not on FTP so that further complicates the issue. Again, good luck. Stephen.

barry2 months ago

Would anyone have a link or know if it is ok to record an assessment ,as all the time you hear where they change things when they type it up back at the office .

Care to be Different2 months ago

Barry – there is no reason why you should not record it but it is courteous to advise them that you are doing so.

Glynis Evans2 months ago

So very sorry to hear your relative is at end of life stage. The last thing you need is all the stress from this process when your relative is so poorly. We are fighting the case across many areas – the LAP actually upgraded nutrition to high & cognition to severe at that stage of the appeal. We are fighting for mobility to be upgraded to severe & also on the areas of primary health need. Unpredictability can refer to a rapid & continuous physical deterioration resulting in a rapid dependency or short term life expectancy. In fact Page 16 paragraph 35 of National Framework describes unpredictability as: “….the degree to which needs fluctuate & thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequately & timely care is not provided. Someone with an unpredictable healthcare need is likely to have a fluctuating, unstable or rapidly deteriorating condition” – which my mum in law had. She had final stage heart failure & According to the NHS, of all general medical conditions heart failure is said to have the greatest impact on quality of life. It also states that the course of heart failure is exceptional in its unpredictability, and for an individual patient, no specific trajectory can be reliably anticipated. Very important is PAGE 18 OF THE GOVERNMENT DOCUMENT ON NHS FUNDED CARE, which states:
“Apart from NHS-funded nursing care, additional health services may also be funded by the NHS, if these are identified and agreed as part of an assessment and care plan. The range of services that the NHS is expected to arrange and fund includes, but is not limited to”: • Palliative care and end-of-life healthcare. Trouble is they try & worm their way out of it in any way they can & the worst part of this is they are allowed to get away with it.

Hello, can anyone help. My dad has end stage Parkinson’s Disease. He is being cared for in the community under social care. We are repeatly told that dad doesn’t qualify for NHS Continuing Healthcare (CHC). Even though he is wheelchair bound, peg fed, needs support feeding, washing dressing, etc. All these things that he cannot due are due to his illness. He also has behaviour problems brought on from the medication he is taking. He has dystonia, drop foot, a hand that won’t open properly. He takes a whole host of meds for Parkinson’s, Thyroid, B12 deficiency, sleeping tablets, anti depressants, etc, etc, etc. He is also on a specialist MCT diet that has been prescribed by a neurologist and a metabolic team. Surely all of these things that are prescribed and advised by the NHS should be seen as medical or health care need not social. Yet the CCG he is under keep saying that they do not recognise any of these as health care needs. I just don’t get how they can say this when dad is involved with so many NHS professionals and they prescribe him so much stuff and looking after him is a 24/7 job. Carers 4 times a day and my mum up all night long. Social service don’t support him in any way when it comes to applying for CHC. I am constantly arguing with his social worker. I have told her that it is illegal for social services to charge dad for NHS care because it isn’t free at the point of service. We have now just been refused another CHC assessment and I don’t know what to do next. My sister has provided so many letters and evidence from NHS professionals about all dads medical needs but these are all completely dismissed. Any advise is much appreciated.

This may help to understand what they are up to:
The National Framework for NHS Continuing Healthcare helps to put things into context:

2.1 Whilst there is not a legal definition of a healthcare need (in the context of NHS continuing healthcare), in general terms it can be said that such a need is one related to the treatment, control or prevention of a disease, illness, injury or disability, and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional).

2.2 In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation

This may also help:
PG 2 what is the difference between a healthcare need and a social care need?
2.3 Social care needs are directly related to the type of welfare services that LAs have a duty or power to provide. These include, but are not limited to: social work services; advice; support; practical assistance in the home; assistance with equipment and home adaptations; visiting and sitting services; provision of meals; facilities for occupational, social, cultural and recreational activities outside the home; assistance to take advantage of educational facilities; and assistance in finding accommodation (e.g. a care home), etc. CCGs should be mindful that where a person is eligible for NHS continuing healthcare the NHS is responsible for meeting their assessed health and social care needs

Hi – would anyone know if this is in line with the National Framework (NF): when the assessors have finished the review they disappear out the back to discuss it. I thought they were supposed to be transparent and discuss it with you in the room.

Hi I have a Continuing Healthcare (CHC) review coming up soon and my wife is at the end stages of Alzheimers and is registered as “end of life care”. What I was wanting to know – would I be better off not telling them and go through the normal assessment or would I be better off telling them that she is” end of life” registered, and I presume they would Fast Track but is that a guarantee that I would continue with funding? Many Thanks. Barry

There is no [legal] definition of a ‘primary health need’ unfortunately, during the Continuing Healthcare meeting your wife will be assessed by looking at:
– the type and particular characteristics of her needs
– how intense and and severe they are
– the complexity of her needs
– how unpredictabe her needs are; including any risks to herself and others if adequate and timely care is not provided

Your wife may be eligible for NHS-funded nursing care (FNC)if:
•she is not eligible for NHS continuing healthcare but have been assessed as needing care from a registered nurse
•she lives in a care home registered to provide nursing care

How will my needs be assessed?

Your wife should assessed for NHS continuing healthcare before a decision is made about whether she is eligible for NHS-funded nursing care.

Hope that makes a bit more sense, the process is quite complicated but your wife’s social worker should be able to provide any support and info you need.

Glynis, not too different from my relative although she could feed herself pureed food with a spoon and wash her face.She did not leave her bed even for a shower as skin prone to tear, as she would have “accidents” involving skin tears although of course they had to risk this for hospital appointments where she was eventually stretchered to because of the numerous skin tears. Getting back to the point, look at Coughlan and in particular her diary of daily needs easily found on google. Absolutely not comparable, Coughlan got about in a wheelchair and was not bedbound.I can’t see that your relative has any social needs at all. Even washing is healthcare, to be clean and dry to avoid bed sores. If feeding is monitored who would the carers report to if there was a problem with intake? The nurse. There must be numerous charts for all the daily interventions, (that is what they call it in hospital. All of it is healthcare not just what is quoted about being covered by Funded Nursing Care. Continence is a health need, it is a domain on Decision Support Tool! Again dressing did not apply in our case because she did not wear outdoor clothes just a change of nightdress, does not come under a definition of ” dressing “. that’s out door clothes. I wish you could see the 32 pages of our Independent Review Panel (IRP) appeal. We have ripped apart everything in that report because the CCG didn’t read all the care notes and clinical records although we provided them with copies. We also asked social rep at meeting what the social care needs were they paid for, she couldn’t answer. The whole process is a farce because the CCG are accountable to no-one. We don’t rate an IRP because again it is sanctioned by NHS, what chance is there it is unbiased? Our own fair hearing is a Court one, something we are considering, the CCG are not above the law. Keep checking this site and read everything you can, over four years in the process we now know more than a Continuing Healthcare experienced solicitor.

Thank you so much very Judy – That is so helpful. We didn’t stand any chance as Lead assessor of Multidisciplinary Team, is also coordinator & chairs CCG panel. Once we receive decision from panel, we will be advising them that we are going to appeal & will take it as far as we can. At any point does the person who is appealing become liable for legal costs?

Daily Living activities (Which are covered by LA) are defined as:
Bathing/Washing, Dressing, Toilet Hygiene, Feeding, Functional mobility
My mother in law is bedbound, has to be washed, has to be dressed, is doubly incontinent, has to be fed & has to be fed regularly. She has to have all this done to survive, prevent disease/illness & maintain her dignity. Yet the Lead assessor has said that all of these PLUS administering medication (including end of life medication) & monitoring of infections all come under the jurisdiction of the LA. They have conceded that the oxygen she is on full time & constant blood pressure monitoring come under jurisdiction of nurse. Although they state that the nurse oversees things like medication, skin monitoring, problems with food intake, monitoring of infections etc (which are carried out by carers), they state that the FNC that the home receives pays for all of this. How can we argue this point with them? Many thanks

The Social Worker on our relatives MDT stated that daily living activities covered by LA included – Managing & maintaining nutrition, personal hygiene, Toilet needs, dressing, maintaining safety & promoting social interaction. However there is a point when these can also cross over & become healthcare needs. For instance when nutritional status is at risk, when a person is bed bound, when a person is doubly incontinent etc. The Coughlan & Grogan cases are prime examples of where care needs were improperly defined. Healthcare needs are defined as – ….such a need is one related to the treatment, control or prevention of a disease, illness, injury or disability and the CARE or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional). There remains conceptual issues as to what constitutes activities of daily living, but it is obvious that at a certain point these may progress to becoming a health care need.

The hospital in our area uses Barthel ADL which scores out of 20. Our Mum scored (our completion, there isn’t one in the evidence,) one just 1/20 needing help to cut up food, she could just about feed herself but her drinks were in kids beakers.She was bedbound (leg ulcers and a separate undiagnosed skin condition leaving her unable to transfer al all and in constant pain) but able to watch telly, read books and receive visitors.We bought the telly, we bought books, there was nothing for the council to fund? Despite this she is not eligible. At the Local Dispute Resolution (LRM) meeting a year ago I specifically asked the social rep what was the social care the Council were legally providing. After a few mutterings and excuses she simply could not answer and said the detail would be in the LRP (local review panel) report , of course nothing of the sort is !!! Since then we have unearthed a mountain of process failure and mistakes drafting the Decision Support Tool and applying evidence and even falsifying the evidence such is the case they cannot win. We are at the point of relishing the idea of taking all this to Independent Review Panel.The panel will no doubt think they are there to discuss interpretation of the National Framework, domains, etc. except we will take probably most of the time pointing out process failure.

Angela Sherman10 months ago

Remember that there’s a big difference between healthcare and social care, as far as funding is concerned and as far as assessments are concerned: Activities of Daily Living are usually talked about in a social care context, i.e. local authority assessments. Local Dispute Resolution meetings, Decision Support Tools, the National Framework and Independent Review Panels on the other hand – these are all to do with healthcare/nursing care, i.e. NHS Continuing Healthcare assessments. Social care is means tested; NHS care is not. Remember also that anyone receiving NHS Continuing Healthcare funding should also have all their social care costs covered by the NHS as well.

Kim10 months ago

We are finally having our Independent Review Panel meeting (22nd March 2018). We have requested the meeting based on a mountain of mistakes in the process and very poor completion of the Decision Support Tool etc. Our case for NHS Continuing Healthcare (CHC) is probably borderline but everytime we question the outcome (local review meeting etc) some scores are changed; so, until the process is properly followed and the document fully completed we do not feel that we should be expected to accept their decision. This has taken nearly 9 months to arrange! And then we have accepted the meeting in a different district because we would have had to wait 6 months longer in our district! Sadly, my mother-in-law passed away last May, but we feel strongly that we follow this through to hope that other people will be treated more fairly.

barry9 months ago

It appears that the NHS does not have sole responsibility for all nursing care. Local authorities can provide nursing services under section 21 of the National Assistance Act 1948 & so long as those nursing services are capable of being properly classified as part of the social services responsibility. This is all a very grey area & one which assessors constantly hide behind.” How would we argue this one?

Many thanks for your prompt and helpful reply. We are about to go through the Decision Support Tool once again for my mother – at recent review the attitude of the assessor was essentially that as you get into the final stage of dementia your needs diminish. It will be an interesting meeting. The key domain will be Psych & Emot which they seem keen to mark down.

Glynis Evans10 months ago

Yes, they are trying that one with us too Stephen. However their needs actually increase as they are unable to communicate things like pain, hunger etc & carers & nurses alike need to be pro-active with monitoring & preempting needs. The Cognition domain will be Severe as the person will be “unable to engage in care planning due to level of cognitive impairment”. On the nutritional side there could well be signs of Dysphagia which will need proper care. Check nutritional levels by obtaining weight levels or Upper arm circumference measurements for last few months. Dysphagia (problems swallowing/choking) can result in nutritional problems & if this is the case then a medically prescribed nutritional supplement such as Forticreme may be needed. Check to see what assessments have been done. Good luck

John9 months ago

Hi Steven, my mum had dementia and died of end stage 2016, however she qualified for NHS Continuing Healthcare at last assessment eight months before she died. So completely the opposite to what your assessor said, they get worse towards the end.

Stephen Reeve9 months ago

Hi John, Agree with ‘worse towards the end’. Unfortunately the CCG are changing their interpretation of the care domains and nature/intensity/complexity/unpredictability so as to remove funding from more folks.

Hi Glynis. Again thanks for your help. Agree with everything you write. Mum has dysphagia & various minor (?) health issues but …. The Care Act s. 22 (2014) is useful. One point that I will be making is that as they reach the final stage of the illness the fluctuations in alertness/mobility etc are more extreme and more frequent which I equate with being more unpredictable …. and I can quote mum’s GP on that point! Good luck.

Glynis Evans10 months ago

You too Steve. My mum in law is totally bedbound, doubly incontinent, has latter stages of Heart & Renal failure, malnutrition, bedsores, epilepsy, is on 24 hour oxygen, severe contractures, has to be fed, has virtually no cognition due to dementia, Dysphagia & is on special pureed & fortified foods plus palliative care pain relief & yet they still say she doesn’t have a primary health need.

My Father was in hospital for 2 months. We weren’t given a formal diagnosis but were told it was probably a form of dementia. Eventually a Decision Support Tool (DST) was arranged but before it took place we were told to move my Dad to a care home. The social worked wanted him in one place but when we visited this home we found it wasn’t suitable for my Dads needs. We found a more suitable home on our own. The DST took place 2 days after my Dad was moved to the home. None of the health care team from the hospital was present so as a result he didn’t qualify of Continuing Healthcare. The nurse at the home had only met my Dad on the morning of the DST. We are the process of appealing but have been told we need Power of Attorney to appeal on my Dad’s behalf. Has anyone else had this experience or can offer any advise? We has only been given a formal diagnosis in the last week. His DST was 3 months ago.

If you were present at the “assessment” ask them to direct you to the relevant legislation that states you are legally obliged to have a Lasting Power of Attorney to appeal…… If your father was “assessed ” by strangers this meeting was very flawed and the CCG has failed to meet its responsibilities and duties…. The assessment process should draw on those who have direct knowledge of the individual and their needs – See The Framework P27 Para 80.

My father had a mental breakdown following my mum’s diagnosis with Cancer. He was in a terrible state. A doctor came out in the night from A&E and recommended he be sectioned immediately however nobody was able to come for him ‘out of hours’ so we waited 4 more days for a psychiatric doctor to come and assess him! We even tried to take him to A&E in between but were turned away. The assessment report said that he “urgently required a hospital bed but there were none available”. Request made by the mental health team to social services for “urgent respite care as he required medical help and could not be looked after/supported at home as my mum was undergoing chemotherapy”.
Social services contacted us 6 weeks later!!
The mental health team said they could support my dad on a daily basis at a nursing home so we had no other option, at an extremely challenging time, other than to find a place for him. I cant describe the situation at home, he just could not stay there in the state he was in.
When social services did make contact eventually they went to assess him and their findings concluded that he did not have social needs that they could support. At this point he was in the nursing home but presenting much better on his 3rd adjustment of medication.
He has just come home and we feel as though we have our dad/husband back after what has been, really a dreadful time. He spent 11 weeks being cared for in the nursing home with daily visits from the NHS mental health team. The home fees are £650/week.
From reading this site I concur that perhaps his needs were not Social and that we were initially pointed in the wrong direction, they were Health Care Needs and as such the NHS should have funded his care. Had there been a mental health bed available, or had he been sectioned he would certainly not have been liable for the cost.

As his care was temporary is the NHS Continuing Healthcare framework valid? Who should I be directing my claim to? Social Services are not interested, perhaps with good reason, but the NHS have a duty of care, surely?

Hi there. My dad was in hospital and they needed his bed so of course he had to go. We quickly found a nursing home which is what the social worker told us to do. Before dad was discharged we did have a Multidisciplinary Team meeting and it was agreed by all members of the panel that dad should be awarded Continuing Healthcare (CHC) based on the decision making tool?? When he was discharged with a few weeks the home (and I guess the local health board held another “meeting” without me being present, although my mum attended and they deemed it that dad was no longer entitled to CHC and told my mum that dad would just be getting Funded Nursing Care. Sadly mum passed away shortly after dad went to the home and I am trying to process a retrospective claim (as dad also sadly passed away). Each time I asked them to hold another CHC meeting as dad had been getting worse the results were the same he did not meet the criteria. I am still waiting for the claim to be processed I am apparently number 26 in the queue (this was instigated 12 months ago! Do you think this could be a valid claim? Thank you.

Sharah – you mentioned the local health board. Are you in Wales by any chance? Keep in mind that all the information on the Care To Be Different website, and on our Facebook page and on Twitter, relates to the Continuing Healthcare system in England. The systems in the other countries of the UK are different (even if only slightly different in the case of Wales).

Thanks Angela – yes, my parents were in Wales. Do you know what are the differences between England and Wales with regard to CHC funding? I have found lots of information but not sure which are correct – there is a lot of conflicting information!

Hi Sarah, I am in a similar position. I would like to be able to speak to you about CHC in Wales..I’m leaving my email address. Hopefully, we can help each other 🙂

Angela Sherman2 years ago

Ceri – thanks for your comment. We never publish personal email addresses here (and it’s not a good idea to post your personal contact details on any public forum or blog). For legal reasons we also don’t pass your personal contact details on to anyone else. I can understand that you want to continue the conversation about Wales. Keep in mind that the purpose of the blog is that it helps all our readers, and your own questions, insights and responses can be of great help to families with similar specific issues – and vice versa. However, bear in mind that Care To Be Different focuses specifically on the Continuing Healthcare system in England. Thanks again for your comment.

Further to Carol’s comment, this is standard wording and and bears no relation to the actual person assessed .We have had similar. Check out Care To Be Different website on how to appeal. We are currently at resolution meeting stage and after 10 weeks have yet to receive a decision because apparently of the numerous comments we have made that they have to address.I am getting so bogged down looking at definitions of everything I am doing it at work when someone asks me to source something I ask ” if there a definition for that ” But it is worth doing as you can counter their rationale better.

That is excellent advice Judy. We are currently going through a local panel review (and if that is not successful we will appeal) and waiting to see how they respond to exactly those phrases and it is good to note that we may again see “stock phrases” and will be on the lookout. If you have any definitions that you would be willing to share – I am sure lots of people would appreciate the time saved and the further dip into the “world of Continuing Healthcare (CHC) terminology.”

“Irene does not have a primary health care need and therefore does not meet eligibility criteria for NHS continuing health care. The rationale for this decision is based on the 4 key indicators, nature, intensity, complexity and unpredictability. It was established by the MDT that Irene’s needs were not of a nature of intensity, complexity and unpredictability which would indicate a primary health care need. It was identified that Irene requires 24 hour care within a safe and secure environment where she can be supported to maintain the activities of daily living. The care Irene requires on a daily basis is not above and beyond that which would be expected to be provided by the local authority, social services. The health needs of Irene are incidental and ancillary to the provision of social care.”

My mum has Alzheimer’s. She is not mobile, cannot move by herself at all and has to be turned in bed by carers to prevent bed sores, she is always in bed now. She cannot communicate, cannot feed herself and cannot eat solid food even when fed. She is doubly incontinent. any medication has to be controlled by carers as she would not remember to take them.

How bad does one have to be to qualify for this funding? I don’t understand how what she needs is just Social care? If she didn’t get it, she would not survive. Do we appeal?

My mother in law is exactly the same as your mum Carol. She has heart failure & dementia & is receiving palliative care – she is on oxygen 24/7. Yet they still say that she does not quality for NHS funding (apart from Funded Nursing Care that the home receives). It is disgraceful.

Wow, what a good website, I only found this yesterday as I’m currently exchanging emails with our new social worker. My father is 56 and has a rare genetic terminal illness called spinal cerebellar ataxia type 2, in March 2016 he was wheelchair bound, was self neglecting, eating cold food as he couldn’t prepare or access his kitchen and sliding around on his backside at home as his flat was too small for an electric wheelchair. We were begging him to get help for ages, a friend finally convinced him. His local L.A. came to do an assessment and wrote things like: doesn’t like to cook, to explain away his inability to prepare food or access his kitchen, (he used to love cooking!)

Not one physical assessment was carried out.
Two weeks later he fell and broke his pelvis and laid for hours on the floor before he managed to call me and I called ambulance. Spent 6 weeks in hospital, the hospital didn’t want to discharge him unless it was into care, but my father insisted. He deteriorated rapidly.

He had a care team In place 4 times a day, when he left hospital; my father refused all care with them, tried to do everything himself, food everywhere, and was incontinent. Care team refused to clean it up, I had to do 500 mile round trips 3 times a week to clean up.

After 4 weeks I found a nursing home and paid 4 weeks out of my life savings – £1069 a week for him to get help. I asked for a variety of assessments, it took 5 months before a single one was carried out. He was sent for 4 weeks to a neurological center for tests. He scored 49/100 on the cognition tests, he went there weighing 56kg, he’s 6foot 4. They said he needed specialist nutrition, 24 hour care, they put a catheter in situ as he was always in retention and bed rails up at night as he refused to ask for help and was very high risk of falls and that he was not able to rehabilitate and would deteriorate. They sent him back to the nursing home needing two carers in place for personal care transfers etc and specialist equipment.
I’ve been asking since the day he entered the care home for Chc. Originally I asked for the fast track, was told he didn’t qualify, apparently he’s had 2 checklists done too all before this 4 week assessment by people who were telling me he should be living independently. Me and my sister have LPA in place, we have asked for copies of these assessments numerous times, non forthcoming.

He was however given full funding by the social as they were calling it temporary accommodation and I was refusing/ couldn’t pay anymore. I offered to move him into hospital but was told by social worker his care needs were being met and not to move him.
However January 3rd 2017 the social worker organised a meeting with my father, who was very surprised to see me at the meeting, but he was there to tell my father that his funding would stop on 31st January and get him to agree to move to a cheaper home and to pay for nursing care himself.
At that meeting the lead nurse said he needs 24 hour care. My father can’t comprehend that sort of questioning or information. Everything my father said, the social worker had to look at me for a translation as his speech is so bad, yet one of the reluctant assessments carried out was by the speech and language therapist again with no input from me, and I have a copy of that letter, it said he has no problems with communication! When I asked my father to relay the content of the meeting back to us, he couldn’t. At first the social worker tried to play as though he knew nothing about the 4 week assessment and was again mentioning independent living, but at the end of the meeting the social worker offered to send me a copy of the report produced after the 4 week assessment!!
So now I have asked in no uncertain terms that I want a full 2 stage assessment carried out with input from his family and the report from the specialist center taken into account, the social worker has said that it’s difficult funding to get etc and he doesn’t think my father will qualify, but he’s moved quickly for once and there’s a checklist being carried out on 23rd January, however I signed the contract at this nursing home and am liable for £1069 a week, about 3 times what I earn on a good week!
I tried to find a cheaper nursing home but I live rural and the only one available was for physical disabilities and they refused to take him on account that he had cognitive impairment as well! So I’ve told the social worker that on 31st January I will be removing him from the care home and admitting him to hospital.
Am I doing the right thing? Should I be demanding a fast track assessment again? Any advice would be greatly appreciated. Thanks

I got the Retrospective Review paperwork back today and out of 28 months being assessed, they allowed mum 7 saying her behaviour wasn’t bad enough or unpredictable, intense, complex enough to warrant a Severe in Behaviour.
My mother went into a nuring home with severe vascular dementia in June 2012. Previous to her admittance her behaviour was very aggressive and this was noted on Care Plans. The Nursing Home tells me that Nursing Care Funding was applied to respite care before mum lived at the Home however no CHC assessment had been done on mum til August 2013. Mum went into the Home in the June 2012 and no Social Service care plan review was carried out until February 2013. This should have been done at 6 weeks. This did kick start the CHC assessment in August 2013 which even though she had severe vascular dementia, completely immobile, unpredictable behaviour and aggression, she failed. I appealed. I never heard anything back. In October 2014 a second CHC assessment occurred and she got it.
I put in a Retro claim back to when she entered the home. They have said they will pay from March 2014 but that her behaviour wasn’t documented enough beforehand and it is decided that is because her behaviour wasn’t bad enough.
I believe mum had a Primary Care Need in the dementia and LA shouldn’t have provided her care because it wasn’t ancillary or incidental to accommodation being supplied.
The report also states that;
“…The CCG would prefer to have the LA representitive on the Panel, however the LA have declined to engage in the appeals process with the CCG’s CHC team. Panel note that the LA do attend CHC assessments and engage with the disputes process locally. The CCG continues to discuss with the LA the position on active engagement in the appeals process.”

Is this correct?

The whole document talk of evidence submitted and notes from the Home and such, but not once does it mention my input or even try to dispute points I made in the last document I wrote stating why I believe my mum had a Primary Care Need from before she moved into the Home.
I will now appeal this but really need some good pointers to push this home. It all hinges on the fact the Care Home managed her care needs and didn’t make a hypervigilant documentation of all her behaviour. Of course because a need is managed doesn’t mean it doesn’t exist or because it is ‘stable’.
Any advice would be appreciated and sorry for the long post.

Same position as Jane, can longer afford our solicitor and anyway we appeared to know more about the Continuing Healthcare process than she did. We have got part elegibility ( 6 weeks) on a retrospective review for 2012/13, based on a comment in the daily notes by a carer, not sure how usual this is, but the needs had not increased anyway, they had always been unpredictable, intense and complex. Local panel early next year. We have all the care notes including Dr and Consultant yet the Decision Support Tool was completed from daily care records only. The assessor seemed to pick the comments from the records that suited them ( despite our solicitor’s input) so I am having to go through all the records and quote everything they conveniently failed to. Any advice would be appreciated and I think I would rather have my teeth pulled than go to this meeting as afraid the will intimidate as assume we know nothing.

Thank you for your comments. I was under the impression that an NHS Continuing Healthcare Assessment should be undertaken before an assessment for NHS Funded Nursing Care. I was also under the impression that if a Checklist takes place the persons carer or representative should be involved especially if the person has been previously diagnosed with early onset dementia and short term memory loss. I have also read that the decision should be clearly communicated to both the person and their carer/representative. Are you able to confirm this please? Thank you in advance

Hi All, Having now dispensed with a solicitor who I feel sadly does not know enough about NHS Continuing Healthcare I am going to attempt to get it myself for my late dad.
Dad had been living at home with me and had 4 calls a day from carers. Dad had a fall and ended up in hospital in 2008. Dad had early onset dementia at this time, he had had a stroke which effected his left side, numerous TIA’s, a heart murmur, prostate cancer and depression and was already at a high risk of falls. I was told by dad’s social worker at the time that he would have to go into a nursing home as they could not put in any more care at home. At this time I was not even aware of NHS Continuing Healthcare and neither was my dad. He had previously been assessed that he did not have to contribute anything for the calls he was having at home.
In paperwork I discovered that a CHC Checklist was supposedly done in November 2008 whilst dad was in hospital. I was not notified of this because they supposedly said that dad fully understood what it was. At the same time they have written comments saying dad did not always remember things. Evidently an outcome letter was also supposedly sent to dad – very strange as he lived with me and it never arrived at my house.
At this time they advised (in the mysterious letter) that dad did not meet the criteria for a full DST. Obviously if I had been aware of this I would have strongly disputed it.
Despite me requesting on numerous occasions for a copy of the Checklist it has never materialised.
Dad did get the Nursing Element paid for him. I feel that I should have been able to be part of the Checklist (if it really did take place) and I was under the impression (please correct me if I am wrong) that a Full Assessment for NHS Continuing Healthcare should be held prior to the Nursing Element being authorised.
I have also never ever seen any sign of a Portrayal of Needs.

Jane – it certainly does sound as though nothing was actually done in terms of a Checklist, otherwise there would be the paperwork to suit. If your dad was ‘eligible’ for the Funded Nursing Care (FNC) payment, then it indicates he had nursing needs at the time. Although FNC can be given to a person who has not reached stage two of the CHC process (the multidisciplinary team assessment) it is always worth questioning whether those nursing needs were actually properly assessed. The local authority legal limit is vital in tis respect.

Please can I have your feedback on which domain the need for care/control of Gingivitis (potentially leading to periodontitis) should go. Is it Skin or could it be Other? As it is a disease and as in this case, as a result of poor attention to oral hygiene, it feels like it warrants a domain to itself. Symptoms include pain, causing a reluctance to eat and drink and therefore overlaps with other domains such as drugs and nutrition. This is a nasty one which is easily overlooked. Any thoughts?

KD – you could argue that those risks and needs should feature in several different domains, including the ‘Other’ domain. Poor oral hygiene is though to be a risk factor in heart disease and possibly also stroke – not to mention the pain and discomfort a person would feel and of course the associated risk of malnutrition. It also requires careful management, which again adds to the totality of need.

I have just lost a claim for my late Aunts funding, she was in a care home for 6 years self funding, using all her capitol and selling her home. They said she needed 24 hour care ,but social not Primary Care. She did nothing for herself, doubly incontinent, didnt dress, wash, go to toilet unless taken, didnt want to eat etc etc. Exactly what is classed as Primary care in laymans terms please. I am 77 and dont understand what they are looking for that would get us a refund. Help.

Since last writing my MiL has died. Notwithstanding I believe we still have a right to appeal against the decision made following the last Decision Support Tool (DST). After receiving the DST from the Multidisciplinary Team (MDT) the CCG referred it to a panel. The DST was carried out in December 2015 and the ‘panel’ met on 30 March 2016. A letter was sent dated April 2016 advising my MiL no longer met the criteria for primary health care so was no longer entitled to CHC funding.
In fact no funds have been forthcoming since September 2015 so the family has funded the cost of care. The reason was that the previous agency providing the carers were negligent and the carers less than trustworthy let alone suitable for the work they were supposed to be doing. The family took the decision to change carer agency. The CHC were aware of this but after the change advised
1. the care agency chosen was too expensive and they were not able to contract with them
2. they suggested changing to another company on their providers list
My understanding is irrespective of any appeal or dispute regarding the last assessment the CHC funding should still be paid until the final decision is posted i.e. April 2016. Is this correct?
Knowing this then I can proceed further both regarding the non payment from September to April then challenging the decision itself.

David – I’m so sad to hear that your mother in law has died. I imagine this is a very difficult time for you all. You still have every right to appeal and you should be send copies of all assessment notes and everything that was reviewed by the appeal panel. If the previous care agency was one that the NHS ‘approved’, and yet the carers were unable to provide the are required, the NHS bears responsibility for this, as the CHC funding contract is between the NHS and the care provider. Yes, CHC funding should continued right up until any actual decision to remove it.

Thank you for at least confirming we have a case. In March the CCG wrote regarding my Mil’s eligibility for NHS CHC and said:
“Following recent review assessment the NHS CHC Team identified that you do have nursing needs which can be funded by the NHS however I’m sorry to say that we have concluded that your care requirements no longer indicate that you have a primary health need and that you are no longer eligible to receive full NHS Continuing Healthcare funding.
A copy of your completed Decision Support Tool assessment and a leaflet explaining how the decision was reached is enclosed.”
As far as I can see this does not detail the way the process has been carried out nor the way the eligibility criteria has been interpreted or and why the CHC assessors and the IRP decision makers changed the scores.
I have a copy of the CCG, Eligibility Panel report which I assume is the IRP. I was not involved then. The Panel Decision states:
“Panel concur with the rationale and recommendation of the health representative but acknowledge that the Social Care Practitioner was not in agreement with the recommendation.”
Having read through all the DST made previously and researched and read articles, including your excellent book, I cannot see how this decision meets the Coughlan Test. Pamela Coughlan was totally paralysed, as is my Mil. PM could eat with help, my Mil is NBM and fed via a PEG. PM could speak and was totally coherent, my Mil cannot speak and has poor cognivity. PM was able to use an electric wheelchair and via voice control use a computer, my Mil is only able to move from her bed to a wheelchair through the use by carers of a sling and is not able to do anything for herself let alone use a computer. I do not know if PM was incontinent, my Mil is doubly incontinent, nor anything about PM’s meds/drugs.
Nonetheless I feel that my MiL primary health needs are as severe as those of PM and following the judgement set down my MiL does qualify.
I am considering writing a letter similar to that in your book referring to the Coughlan Test as well as asking for the items you have suggested. Is this the right course of action as it would seem we have exhausted the assessment/IRP routes. I would welcome your comments
David

My husband with frontal lobal dementia is in supported accommodation as directed by hospital and I would like to know if legally I can be regarded as a dependant as i live separate in my own home and am dependant on his pensions. this is for housing benefit purposes currently being asessed. I was told that legally he is responsible for half my household bills and my upkeep. Im concerned that he should get full housing benefit of 412 which is his rent. which the council may try to regard him as a single person. He needs 24 hour care.

Teresa – has your husband been assessed for NHS Continuing Healthcare funding? If not, this should happen as a matter of priority. Regarding other benefits, you may fid it helpful to have a chat with AgeUK about that.

Hi, I’ve just come across this fantastic site and hoping to get some advice – apologies for the long post. My mum is in a care home which is closing down (we were given 6 weeks notice – we have just over 3 weeks left). My mum is currently receiving Band C Local Authority funding of £530 a week and has to make a contribution of £197.00 a week. We have not found any suitable homes which could accommodate mum’s needs with the current funding. She owns a bungalow which my brother co-owns and has lived in for the past 10 years, but has been told he has to buy mum’s share (at a reduced rate). We have found a couple of nursing homes costing £750-£800 per week but cant afford these on current funding. I am really worried about what is going to happen to mum. Without any family involvement a team of Admission Matrons went to the care home and assessed my mum, no nursing staff from the care home were actively involved but mum’s file was apparently reviewed. I appreciate that this was not a full assessment but I feel its inappropriate for my mum to be “questioned” and assessed by people who have absolutely no idea of her needs and mum would have no idea of the importance of her responses to their questions. They used the CHC checklist. They have put all”C” apart from 1 “B”. However, I have emailed the recently appointed social worker (who I am meeting tomorrow) to say that I do not accept the results of the assessment and my reasons (thanks to the advice on this website!). My question is whether my mum is eligible to receive CHC funding, Nursing Care funding or at the least Band P LA funding based on the fact that: She is registered disabled – or at least she was prior to going into the care home, due to no mobility due to severe osteoarthritis and osteoporosis. She has Type 2 Diabetes, Vascular Dementia, cataracts, deaf but refuses to use her hearing aid, is doubly incontinent unless taken to the toilet regularly by care staff – she doesn’t ask to use the bathroom but she has been classed as C – “continence care is routine on a day to day basis” Whereas it is B “continence care is routine but requires monitoring to minimise risks, for example…chronic urinary tract infections” – mum suffers with repeated UTIs including a “serious” UTI at her previous care home. She can not weight bear at all – cannot stand. She can not move in her chair, has to be moved to be made comfortable by two carers but has been graded C – she is definitely an A. She does not eat solids due to either physical or psychological reasons – she chokes, attempts have been made by hospital to establish the reason but mum got too distressed to have the camera down her throat, she takes hours to consume a yogurt and/or fortisips – gets assistance to eat, but has been Graded C whereas she should be an A – nutritional status at risk and may be associated with unintended or significant weight loss. Her weight has been a cause for concern, dropping to 4 1/2 stone (5ft 5) but her current care home has done wonders in helping her gain weight but now about 6 stone but that is with a great deal of encouragement and assistance but she only drinks Fortisip drinks, coffee, squash and smooth yogurts – the CHC said her nutrition was C and that she refused normal oral nutrition. She has suffered from pressure sores (whilst in hospital and at a truly awful care home she was placed in before her present home). Drug Therapies has been graded C whereas it should be A “Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care”. I realise that I am rambling but I’m struggling with all the information I am attempting to take on board to fight mum’s corner. Any help/advice is so greatly appreciated. Also, can someone point me in the direction of the Local Authority Limits(?)

Thank you for your reply. Well, our meeting went well today – the social worker has re-assessed mum’s funding to Band D plus Funded Nursing Care so that we have a better choice of nursing homes for her move, bearing in mind the closure. The social worker also said that she is disappointed that the Nursing Team met with mum and assessed her without any family being notified and said that the only reason she could think of was due to the urgency of the situation as the current home is closing, but she then went on to say that the regulations change with regard to FNC on 1st July, in that if someone becomes eligible for FNC then they automatically have to have a full assessment for CHC. So, she is not going to amend mum’s funding until the 1st July (Friday) and then this will trigger the full CHC assessment and she said that whilst it is unlikely that we will get funding she is more than happy to take on the battle, with full involvement with me, to see what we can achieve. I am very grateful to the information contained on this website as I fully believe that it helped me with my argument to justify mum’s reassessment, obtain the FNC for now and encourage the social worker to fight for CHC.

For months now we have been trying to find out about a Personal Budget for my mother in law but with no response. Since her stroke she has been looked after in her own home with 2 live in carers. My MiL had a stroke 5 years ago and I with the help of her GP set in motion a Fast Track CHC. This has been in existence since but last year despite there being no change in her situation, paralysed, NBM so PEG fed, doubly incontinent etc, the CCG decided my MiL was no longer entitled to CHC funding. In June 2015 her levels on CHC assessment review were:
Behaviour – No needs
Cognition – High, down from Severe in 2014
Psychological – Moderate, increased from No needs in 2014
Communication – Moderate, down from High in 2014
Mobility – High
Nutrition – High, increased from Moderate in 2014
Continence – Moderate (now uses pads), against High 2014 (catheter inserted)
Skin – Moderate
Breathing – No needs, down from Low in 2014
Drugs/Meds – Moderate (all via PEG)
ASC – Low

Following this her CHC funding for 2 live in carers was continued. At review in December 2015 the following were awarded:
Behaviour – No needs, no change
Cognition – Severe, up from High
Psychological – Low
Communication – Moderate, no change
Mobility – High, ditto
Nutrition – High, increased from moderate
Continence – Moderate, no change
Skin – Moderate, ditto
Breathing – Low, up from no needs
Drugs/meds – Moderate, no change
ASC – Low, ditto

Despite the levels being increased on certain parameters and none reduced the decision was to remove CHC funding. Further on referral to IRP not only was this decision upheld but also the panel reduced Cognition from Severe to High and Nutrition from High to Moderate. Since December we have been trying to understand and get an explanation why, despite little change either in her health or the markings, funding should be removed. The only explanation we can think is cost savings.
A complication is that since June 2015 we have, at the suggestion of the CCG then, changed the care agency. Being naturally suspicious I believe they have taken this as an opportune time to change their original decision. So since 2015 no finding being provided the family has had no alternative but to fund my Mils care ourselves. We believe the CCG are incorrect and we are entitled to continuation of the funding, if not in full then in part since 2015 hence our request for Personal Funding. Any help or advice would be most welcome as we are coming to the end of our tether.

That sounds very frustrating, David, and I can understand your suspicions. You need to challenge and appeal everything you believe to be wrong in the 1) the way the process has been carried out and b) the way the eligibility criteria have been interpreted in your mother in law’s case. The CHC assessors and the IRP decision makers must be able to justify why they have changed the scores, and you should have a copy of their full rationale. You could also write to the Head of Adult Care at the local authority (LA) and make it very clear that the LA is now in a potentially illegal position, by effectively having taken responsibility for care that may be beyond their legal remit. Be sure to read this article and the comments underneath it: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

Hi – my son is profoundly disabled with learning difficulties, epilepsy, sensory issues, doubly incontinant, behaviour problems, no speech, non mobile, just to name a few of his issues. We were one of the first people in our county to have a personal budget on CHC under the pilot scheme. This lasted for 3 years. During that time we were told we could use his budget for all his health needs, i.e. pay for carers to help me care for him and also to pay for activities like hydro, swimming, etc which got him out, gave him a purpose to get up and kept his mobility going, it was also key in keeping his behaviours under control.
When the pilot scheme ended we were told that although my son’s health needs would be provided for, we could no longer use the budget for anything else so all his activities and going out and about ended. This has resulted in a huge decline in his health, behaviours, and he now has severe anxiety panic attacks because the world that he was used to and knew has been turned on its head.
My son lives with us and we use three rooms for him and all his equipment; it’s not an annex so we get no help with council tax or rent. We pay for all his food clothes etc etc and we have two other kids to consider so we can’t find any more money to pay for activities and petrol, so we are forced to try and contain him at home. I have complained but it got me know where. I was just told it was my choice to have my son at home so I needed to cut my cloth like other people!
I know I’m lucky to have help with his health care needs, but people with complex needs and the mind of a small child like my son need a life too. Maybe it’s just he doesn’t matter in the grand scheme of things, but I feel like I’m being forced to give up caring for him at home because they are making it too difficult to manage to carry on. Cheryl

I imagine that’s so distressing, Cheryl – and upsetting and frustrating too, to say the least. Personal budgets for CHC are something the NHS has made a big thing of, and it has been at pains to promote positive case studies about them. Is this something you would perhaps go to the press about?

I wondered about what can and can’t go in the 12th Domain. Can personal hygiene care (washing, dressing, toileting etc) go in there? When, I asked about this at a dst meeting, the nurse assessor said that it was taken into account elsewhere, which meant she made a few comments under the Psychological Domain. However, my mother, who had dementia (now passed away), needed a lot of personal care, being unable to do anything for herself, and I feel the quantity of this type of care gets lost when considering if there is a primary health need. I also asked using the domain for vision (she had cataracts and wouldn’t wear her glasses) and deafness (she was severely deaf and wouldn’t wear her hearing aids and was told these were included in the communication domain.

In 2013 my mum was diagnosed with Alzhiemers which we were managing. In Sept 15 mum had a major stroke leaving her paralysed on her right side, expressive and receptive dysphasia and newly diagnosed vascular dementia – creating a diagnosis of Mixed Dementia. After a few weeks being discharged to home (she lives alone) with a care package, mum was re-admitted to hospital with heart failure. She was treated and discharged back home – sadly on the way home in the ambulance she suffered a second stroke and was immediately returned to hospital where she remains. In this time her mobility and congition have deteriorated significantly and we have been advised that her heart failure is severe- she is not mobile, not orientated to time or place and has daily bouts of severe crying and distress begging to go home. She is not aggresive but extremely distressed. Mum can no longer live at home as she needs 24 hour care and I have been looking for a suitable nursing home for her – this in itself is difficult as they are either awful, full or can’t accommodate my mum’s needs. Under the suggestion of the hospital staff we attended a DST meeting last week with a very unsupportive social worker who we had never met before (our current social worker has not been in contact with us since December and never returns my calls) We failed to meet the needs based on the scoring of mum’s Cognitive and Psychological needs – despite robust examples from myself about the unpredictability of mum’s behaviour and examples of her lack of ability to communicate or initiate anything for herself I was told that she did not meet the levels required and that her behaviour was not behaviour but cognitive and that she was compliant with care. This is true, because she needs constant reassurance. The RMN assessor agreed that she needs 24 hour care and that there is indication that she will very soon move into a severe score and that although she doesn’t meet CHC she does qualify for nursing care. My anxiety is that mum doesn’t have any money or property and we have no means to pay for care and I am afraid that this will mean that she will be put into a care home that will not meet her needs and that she would not be happy in. I have visited a great many of them and they are awful, dark and smelly. I am fighting but in the interim, mum is sitting in a discharge ward and not being properly cared for and I need to find her a good place where she will be properly cared for and have an outside chance of settling. The hospital want to discharge her and the ward is so under staffed she is not washed or changed regularly enough and they don’t ever seem to brush her teeth. I often find her with a yoghurt pot in front of her with the lid on which she has not physical or cognitive abililty to open or feed herself with – I am truly desperate. Do you know in this instance what level of funding social services will pay? Mum’s care package at home comprised of 5 calls a day and was expensive but was signed off based on her high needs and yet the social worker is telling me that this budget will not apply to a care home and that it will just be the standard fee agreed. I am confused beyond measure and would appreciate any advice.

Debs – if your mum genuinely has to pay for her own care (and you can appeal the Continuing Healthcare decision), and she is funded by the local authority on account of insufficient funds of her own, the local authority MUST find a care home that can meet her needs, even if it costs more than they will usually pay. If they fail to do this, they are negligent, because your mum will be at risk.

My Mum has very recently been declined CHC funding following an assessment by a CHC nurse and a social worker. My 82 year old mum has multiple myeloma and other health issues and has recently had 2 severe falls whilst in respite care, the first breaking the head of her femur and the second breaking the top of her humerus. My mum’s mobility was very limited prior to either fall due to the curvature of her spine caused by the myeloma and pain, she could only walk with a frame for support. Following her falls mum is unable to weight bear independently and unable to support herself due to the breaks in her hip and arm and shoulder. Because of her lack of mobility mum has had to move to a residential home because my dad who is 88 and has a number of health issues is unable to care for her. Initially mum was awarded CHC funding after her McMillan nurse fast tracked the paperwork, mum’s health has not improved and has in fact deteriorated, however she is now deemed to be no longer eligible. My mum has been assessed for dementia since being admitted to the home. She is currently placed on an EMI unit because she presents confusion. However, a conclusion cannot be reached because the confusion could be due to the advancement of the myeloma. It seems ridiculous that my mums health is worse than ever, however, she is deemed to have only social needs. In addition the copy of the DS Tool that we have received has incorrect information, it states my mum’s gender as male and has the wrong GP information, initially I was sent the wrong DS Tool, I was sent a completed form belonging to a gentleman placed in a mental health unit. I would appreciate some advice about whether I should appeal the decision. I have found this website by chance today and it is fantastic – thank you to everyone who posts.

Thank you for your kind feedback on the website, Diane. Definitely appeal – and make a high-level complaint about the breach of confidentiality with respect to the information you were sent relating to someone else. Pick apart the Decision Support Tool notes and highlight every error, inaccuracy, omission and misleading statement in your appeal.

I have a couple of enquiries if anyone could help / advise please? My Mum has multiple myloma, osteoporosis, osteoarthritis, anaemia, thyroid problems and on-going UTI’s to name a few health concerns. She also presents as though she may have dementia, however the memory team are unable to assess due to her other conditions .Mum had a fall whilst in respite and broke the head of her femur, she has been in-between hospital and Nursing / Care home ever since. Mum has had a number of falls the latest resulting in the breaking of the head of her humerous, this has taken the very limited (shuffling a few steps with a frame) mobility she had and she is now unable to weight bear without the support of two people. She is extremely unsettled, has hallucinations, has lost her appetite, constantly refuses food and drink and also refuses to take her medication. Initially mum’s McMillan Nurse completed a Fast track for CHC and it was awarded (this was prior to the falls) She was re-assessed in February and is now deemed not eligible and my Dad (88 with lots of serious health issues) is worried sick about finances and having to pay etc. I really cannot get my head around the whole situation, so any advice at all would be hugely appreciated.
Secondly, when the local CCG assessed mum, they sent me and Dad a letter to inform us of the decision, they also included in the envelope the completed DST for a gentleman resident in a local MHU, by mistake which is I believe a huge breach of confidentiality. I informed them straight away and was advised to dispose of the paperwork immediately by several members of staff, including one of the CCG Team leaders and my mum’s social worker. I am hugely concerned about the whereabouts of my mum’s confidential information as well as the risk of identity fraud etc. I have written a letter of complaint to the CCG, but should I be informing anyone else? I feel as though this situation is not been taken seriously by the CCG.
Many thanks.

Hi Diane – that sounds very distressing, and the issue with the assessment records is a huge breach of confidentiality. Write to everyone possible – the CEO of the CCG, the Head of Adult Care at the Local Authority, the GP, the Head of Continuing Healthcare – and you may want to go to the local press. If you were told to dispose of the incorrect paperwork, I wonder how that gentleman’s family will ever receive it, and whether they have even been told? That’s not your problem of course, but it occurred to me while reading your comment. Regarding the removal of CHC funding, the funding cannot simply be removed without proper review. If the funding is removed in this way, the assessors (or whoever removes the funding) are effectively saying that your mother’s care needs have fallen below the threshold for NHS care and that they are now ‘just’ social care needs. If your mother’s needs have not decreased in such a way, this would put the local authority in an illegal position – because they would be taking responsibility for care that was beyond their legal remit. So there must be a proper review of each domain, to ascertain whether or not your mother is still eligible, and this should be done before funding is removed. If it turns out to have been correct to remove the funding, your father should not have to use any of his own money/assets to pay for your mother’s care.

Thank you so much for this information. I have written a letter of complaint to the CCG, but so far there has been no response. I will now ensure that I widen my audience by writing to the GP and the other bodies that you suggest. Many thanks once again.

Has anybody had any experience of CHC assessments for elderly people with a history of clinical depression/anxiety which has now resulted in them being placed in a home as they cannot manage in their own environment (at risk/vulnerable). The depression/anxiety has impacts on their health and welfare. They are on a cocktail of medication for regular health problems, depression/anxiety and pain relief (24 hour patches) for Spinal Spondylosis. Mobility is now limited (needs frame/wheelchair), withdrawn from daily life without constant reassurance/encouragement (such as washing, eating – only than 40kgs in weight, social interaction), disturbed sleeping, worrying and crying.
The physical side of her health is a concern but it is her mental health that is causing the decline. She has been referred (again!) to the mental health team for assistance but there seems nothing on the DST that covers this as the primary concern. Any ideas?

Each of the 12 care domains should be taken into account in the Decision Support Tool (DST), including Psychological and Emotional Needs – plus the impact such needs have on the other domains. Many people feel that the Behaviour, Cognition and Psychological/Emotional domains get diluted by the others, but there will almost certainly be knock-on effects (needs and risks) of the mental health issues on some of the other domains (as you have mentioned), so be sure to build a full picture of need.

My dad has just had the 3rd CHC assessment refused. I appealed the first but ran out of courage at the thought of a review panel. Dad receives NHS funding. On the 2nd assessment I was told that the information I had gathered re my dad’s health needs could not be accepted as I had not told a nurse. I diligently continued to record my dad’s health problems and discussed them with the nurse. Now at the 3rd assessment my information cannot be accepted because there is nothing on his notes that supports my observations. My dad suffers from dementia, is bed bound and frequently hallucinates and has terrible delusions. He also falls into deep sleeps when he cannot be woken. When this happens the carers write “appears to be asleep” and at meal times “declines food” when he is actually asleep. When dad’s hearing aids are not working (which is often) his behaviour is not good, but this is not recorded. He has other health issues -catheter insitu and immobile. Does anyone know if it is correct that my information cannot be taken into account?
Thanks, Margaret

The problem of inadequate care notes is a major one, Margaret. Very often they are poorly kept, hastily scribbled and don’t reflect the extent of care needs that needs to be taken into account in CHC assessments. However, your evidence should be included in the Family Statement of Needs – a valid part of the assessment notes. It shouldn’t matter that you haven’t ‘told a nurse’ – the chances are your verbal accounts to the nurse wouldn’t have been written down anyway. It’s very frustrating. You may need to kick up a fuss about the quality of the care notes and that they are unfit for purpose when it comes to CHC. Make sure the CHC team know you are making this complaint – and you could also ask the CHC team what they actually do to make sure care homes understand the extent and quality of notes required.

I’ve just recently appealed my mother’s CHC’s decision and would like some help with the 12th domain on the DST. My mother is type 2 diabetic, which I put in this domain because of health complications risk, low blood pressure, feet problems, hypos etc. The assessors wouldn’t allow this because it is diet controlled and not by insulin and it was mentioned in the nutrition domain. They said the 12th domain is for people on dialysis etc. Just wanted to know if this correct.
Thanks
Sue

I’m very new to this so please excuse my lack of knowledge. My situation is that my mum (86) has Lewy body dementia and a fused spine and is cared for by my frail dad (86) Her mobility has been declining for years, she shuffle walks with a zimmer (supported by dad) and used a wheelchair. Dad does all her care needs! Cooks and cleans etc we me going in daily to check and support them. She had a UTI 2 weeks ago which sent her into rapid decline, unable to stand, weight bear, not knowing where she is etc. She was discharged back home for care in a ‘virtual ward scheme’ Including hospital bed and equipment, care aides coming in twos four times a day supported by nurses and ot’s etc. As she can no longer stand it takes 2 people’s to move her, however during the night she shouts him and he tries to toilet her obviously this lasted three days before she was admitted again. (With Lewy bodies she acts out her drams so now the sides are up on the bed as well) They have mentioned concerns about mum and dads safety, safeguarding?, concerns about dad being able to give med’s etc, the need for care in a home ? She has now been transferred to a ward to see if any mobility comes back and everything is now up in the air!
I need help / advise on how to handle this correctly! Can I insist on a delayed discharge until relevant assessments including continuing care assessment is done. Can they move her to some kind of respite care? And do assessments there.
Her now being unable to stand has thrown us into new territory, we are being told a hoist is out of the question for dad to control and that two people need to lift her. Although mum and dad are not accepting of the situation and dad just wants her home to care for her and she wants to go home! The whole situation is really sad and just want the best for them so any advice on how I should handle this would be greatly appreciated as I’m totally lost now?? Many thanks

If your dad wants her home then there may be little you can do about it unless the social services get involved. Your mum’s need sounds obvious but your dad’s wishes play a part as long as he can provide adequate care. He might do better with nursing support. That alone might be sufficient to ask for a CHC assessment so that nursing could be paid for at home. My dad did this for my mum for a while but was still left with her troubles when nurses and carers were not around. Night care was almost nonexistent when it was perhaps the worst time in the day for him to try to maintain care.
I would ask for a NHS CHC assessment as it sounds like your mum needs a nursing home and not a residential care home (that does not provide registered nursing too).
My dad was considerably younger than yours when he had to let my mum go. He looked after her for over ten years before this happened. It has been both easier and, because of the unwarranted guilt, hard on him for the last six years but at least he has lost the stress and sleep deprivation that was making his choices and care provision, harder on him each day.
I hope for the best for you all.

I think that the NHS pays for nursing carers that have been employed for the number of hours assessed to cover the needs, when a patient is staying at home. When in a nursing home, the NHS pays them directly.

Having appealed against a CHC decison with regard to my Aunt we have been sent a strategic Health Authorities Appendix 2a questionnaire to complete. Whilst the Nursing home (the clue is in the title!) has drafted a response I am concerned that anything written on this form may be held against us with regards to the appeal and would be grateful if you can comment on whether completing these forms is commonplace and what further assistance we should engage – GP, Solicitors, etc.

Strategic Health Authorities (SHA) were abolished in 2013, so it’s very odd that you’ve been sent an SHA form to complete. The forms relevant to Continuing Healthcare are the Checklist, the Decision Support Tool, the Fast Track form and (generally in retrospective claims) a Needs Portrayal. Has the form come from and Independent Review Panel? Or from the CHC team?

The common practice is assessing MET NEEDS which is not the correct procedure, resulting in people with nursing needs being placed in residential care instead of nursing care thus ending up in A&E more frequently, with UTIs falls etc. Also it is common practice to downgrade needs, so placing people in the position if finances allow to self fund. Although it is Social Services role to find beds it does not remove the responsibility of the NHS to pay.
Problem is the CCGs hold the purse strings so therefore have an obvious conflict of interest when it comes to funding. Perhaps it would be more helpful for people if there were independent assessors doing CHC assessments.

Hi, I’m not sure if this is the right thread but I am appealing a CHC panel decision that my Mum is not eligible for NHS CHC funding. There are many issues but one of which is that the MDT recommendation was that ‘her current care needs can be well managed in a dementia high dependency residential care environment’. Can anyone clarify what this means? Mum has had Parkinson’s for approx 14 years and Dementia in Parkinson’s with mobility problem, including high risk of falls due to possible foot drop, and vivid sometimes very disturbing hallucinations.
Any help would be much appreciated.
Thank you
Julie

Hi Julie – assessing ‘managed needs’ is a very common error in Continuing Healthcare (CHC) assessments. This article may help: http://caretobedifferent.co.uk/continuing-care-assessments-2-frequent-mistakes-part-1/ A CHC is not an assessment of the care provider’s ability to provide care; instead, it is an assessment of a person’s underlying needs, as if no care were in place. One would hope that a care provider could indeed managed all care needs well – but this does not mean a person’s underlying care needs are any less.

Hi. Would appreciate a view on whether the LA social worker can ‘enforce’ my father (dementia / health needs) to be moved from a care Home where he has been for 4 years to a Nursing home on the back of a ‘Nursing Needs Assessment’ and a CHC initial checklist assessment. The CHC checklist was conducted by a District Nurse and assessed my father as at the highest in 5 domains including ‘Behaviour’. My father clearly needs Nursing care now, however the LA have identified a Home that he can transfer to (seen it, nice & efficient enough but nothing special ) that meets their funding limits. I have PofA on his financial affairs, and going this route his pensions will contribute a considerable amount to diminishing the LA’s own contribution and the nursing contribution from the NHS.
It just seems like the NHS and LA have engineered this route using the ‘tools’ available, as the least costly for them rather than waiting for the CHC to go to the DST to see if full funding would apply. How can I get them to move him to a better nursing home (cost more but better care) without involving myself in the ‘top-up’ process and possibly being landed with that on an ongoing basis if the CHC fails at DST?
I know he needs full nursing care – care that the residential home feels at risk about, so he needs to move, quickly.
Desperate for a quick answer or view!

Thanks for your comment, Eric. Here are a few points that may help: If your father has scored so highly in the Checklist, the next thing that should happen is a Multidisciplinary Team (MDT) assessment using the Decision Support Tool. Only after this has been done, and only after a funding decision made, and only if your father is not eligible for CHC should be any discussion of his finances. CHC is available in ‘ordinary’ residential care homes as well as in nursing homes. Your father does not need to move to a nursing home in order to receive CHC. There may however be an argument for him to move if his care needs cannot be properly managed where he is at present. Local authority funding, local authority funding limits and local authority top-ups are completely separate to CHC. If he moves to a new home, the NHS may still have a duty to pay in full, depending on the outcome of the CHC assessment process. This process must be complete before anyone asks your father to pay. Local authority funding limits are irrelevant if he receives CHC.

Thanks Chris, that was exactly the answer I was looking for, because the MDT people assume we don’t know squat and they can tell us anything. I got in touch with the council to see if they had an advocate that could help at the assessment, but it seems I could get all kinds of help if it was social but not if it was CHC. Everybody is afraid of getting involved, so you finish up on your own against these people. Again thank you for your help.

Both organisations are supposed, (in the rules), to involve an IMCA (Independent Mental Capacity Advocate), if the patient has cognition issues. I have obtained one myself in the past but never have the org’s done so.

I had a look at pages 14/15 of the DST and this is a section which to me sounds like a get out clause: “This may also, depending on the combination of needs, indicate a primary health need and therefore careful consideration needs to be given to the eligibility decision and clear reasons recorded if the decision is that the person does not have a primary health need.” I can hear them now saying oh well its all about the 4 key indicators.

A recent Independent Review Panel (IRP) I attended argued against the CSU manager who used the same wording to try to wriggle out of the two “severe” levels scenario, in these circumstances. The other part states:-
“A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
• A level of priority needs in any one of the four domains that carry this level.
• A total of two or more incidences of identified severe needs across all care domains.”

The chair could not accept that the government that engendered the framework, would have intended one outcome when they had written rules that implied an expectation of the opposite.

The IRP also stated: “The MDT mixed up the 4 key indicators, disregarding for example unpredictability because it was not complex [too]. The IRP concurred that the 4 key indicators had been mixed up and were not robust. […]”

In a nutshell I accused the MDT of failing to apply the criteria because at one point the need was complex but not intense. There again, the nature of a need in another domain was intense but not unpredictable. It was also noted that the MDT tried to use the 4 key indicators at every single domain in the establishment of the domain scores.

The IRP stated that it was wrong procedure to do that – and also that we were not around during the private MDT stage when the MDT would indeed have needed to apply the 4 key indicators to the evidence and not the domain scores, as it seems the MDT always does.

I thought health needs were NHS not local authority: “There are identified health needs in Behaviour, Nutrition, Continence and Breathing but they do not appear to be intense or unpredictable.” The intense and unpredictable thing keeps coming up, so what part would the NHS pay for and what part would be the local authority pay for? And there is no mention of the other domains. Behaviour Severe, Cognition Severe. I will follow the link. Many thanks.

Would you please be able to tell me the National Framework position on this. It’s from the panel after an assessment: “A primary health need cannot be identified. There are identified health needs in Behaviour, Nutrition, Continence and Breathing but they do not appear to be intense or unpredictable. I believe that a joint funded package would be appropriate”. Thank You

Sometimes a ‘joint’ funding decision is reached, which means that part of the money comes from the NHS and part of it comes from the local authority. However, care provided by the local authority is means tested. I’m always wary of joint packages, because I have seen instances where this seems to have been a way for the NHS to reduce its financial contribution – and the person did in fact have a Primary Health Need. More importantly, if a person’s care needs are beyond the local authority legal limit, the NHS must pay in full. http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

I agree Angela. I am mystified how someone can have a partial “Primary Healthcare Need (PHN).” The need exists or it does not. It is the total needs that are being assessed and no one is permitted to look at so called social care needs separately and so allocate a level of responsibility on the the council. If the needs are within the council’s remit to provide for then they are the council’s responsibility.

If any part of a Primary Healthcare Need exists then I would always argue that the criteria has proven a PHN. The framework does not grade levels of PHN. It exists or it does not.

An MDT is supposed to cross reference all needs in making the PHN test. Just my point of view you understand.

Chris mentioned earlier about drugs score. The descriptor for a moderate score reads:-

Requires the administration of medication (by a registered nurse, carer or care worker) due to:

non-concordance or non-compliance, or type of medication (for example insulin), or

route of medication (for example PEG,).

OR

Moderate pain which follows a predictable pattern; or other symptoms which are having a moderate effect on other domains or on the provision of care.

I think that merely having to administer the drugs covertly is covered by this score. To score severe I think it would require some further significant degree of non-compliance where the patient pulls out the PEG or refuses to have injections “placing them at risk of relapse”. It seems to me that there is a significant increase in the problem of administering the drug between the moderate descriptor and the severe descriptor. But I do not think that sufficient attention is given to the careful monitoring requirements when the patient is being prescribed a cocktail of drugs all of which have different side effects. So its a question of building up a picture of the need to watch out for adverse symptoms and adjust the medication accordingly and of course this is all made more complicated by (a) being unable to communicate effectively to tell you how they feel, other than it being blindingly obvious that one is now experiencing acute headaches.(b) their inability to understand why it is necessary to take medicines and being non compliant – so there is interaction between the Behaviour, Cognition and Communication domains. In all probability, they have some notion of what is happening and this is probably causing depression, so that affects the Emotion/Psychological domain as well.

Remember the Pointon case, where the Ombudsman held that Mrs P had become a skilled carer providing the same level of health care as a qualified nurse could provide and which was required by Mr P. You are in much the same position as Mrs P.

Hi Barry,
I know what you are getting at. However, the last part of the wording does not relate to pain or peg feeding tubes or diabetes meds at all, but to a simple risk of relapse due to the risk of non concordance.

That last wording also being prefaced with the word “OR” makes any of the clauses stand alone clauses.
Concordance in the DST glossary is actually described as:-
“Concordance
An agreement between a patient and a health professional regarding the provision of care. […]”

If meds are rejected by someone with poor cognition perhaps, and if medication is not pain specific that can be delayed until the patient screams for it, then the entire drugs domain “severe” clause could read:-
“Risk of non-concordance with medication, placing them at risk of relapse.” It is clearly a stand alone clause. The validity could be immediately confirmed if the patient is covertly medicated because of actual Non Concordance.

If there is not a risk of relapse then why is the medication still being administered? Administering unnecessary meds is assault. I doubt that any of us would get away with covertly medicating anyone, if we tried it. The NHS can’t have it both ways.
Bear in mind that each of the four clauses in the severe part of the drugs domain can stand alone by virtue of the word “OR”. The last part is re-enforced by the patient perhaps recording a severe level for cognition in the DST.
One cannot give concordance without volition or cognition. Therefore the risk of non concordance is being well managed by covert medication.

A carer is not allowed to make the decision to covertly medicate; a nurse is required to and there is generally a need to formalise the covert meds on a Deprivation of Liberty Safeguarding form too.

It should also be in the care plan.

You are quite correct in that anyone can administer meds but one would still require a medical opinion that covert administration was necessary.

Chris
I have just used your argument regarding covert medication at Mums mdt meeting today. Due to her refusing meds and suffering from urinary infections she has just had a covert medication authority sanctioned. I repeated what you said about administration of unnecessary drugs being assault and risk of relapse. Was told this only applied to drugs such as for epilepsy and diabetes which could endanger life if not taken. If I wanted to take up the case of covert administration of mums medication I should take it up with her GP as she has suffered no ill effects from not taking them.
Thought I was on a winner there because I needed another severe. Only got moderate.

What I keep getting told by people who have been refused funding is it’s not the scores in the DST its the 4 characteristics:
Nature
Intensity
Complexity
Unpredictability
Would anybody have examples of what they mean? I thought it was all about the scores.

I’m not exactly sure what they mean either. I relied on my solicitor for this part & he had a raft of stuff prepared. What I can say is that in my case it was not used. When it came to this part they retired to consider it themselves and left us excluded! When my solicitor objected they very grudgingly allowed him to dictate his conclusions. Needless to say they have not appeared in the DST report! When they came back they told us that funding had been refused. Not only are they not allowed to do this (the MDT has to make this decision) all 4 characteristics were concluded by them in secret with zero input from family. Even worse my solicitor said they did this to him again the next day and didn’t even come back to share a conclusion.
If that’s two cases from someone whose sole business is CHC, how frequent is it going to become? It seems there is now a need to watch out and be prepared to object to this one.

This is not uncommon, Gail – that assessors will say the family should be excluded from discussions about nature, intensity, complexity and unpredictability. It happened to me personally, too, but I insisted on staying for that part, much to assessors’ annoyance. It’s an integral part the assessment process.

The Decision Support Tool (DST) guidance (supported by the National Framework) is very clear that if a person has two Severe scores or one Priority score, they can expect a decision of ‘eligible’. See pages 14-15 of the DST: “A clear recommendation of eligibility to NHS continuing healthcare would be expected in each of the following cases:
• A level of priority needs in any one of the four domains that carry this level.
• A total of two or more incidences of identified severe needs across all care domains.https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213139/Decision-Support-Tool-for-NHS-Continuing-Healthcare.pdf
The National Framework is underpinned by the NHS Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012. These Standing Rules support case law, including the Coughlan case. http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/
I hear many accounts of families being told that it all comes down to the ‘four key indicators’ (nature, intensity, complexity and unpredictability). Although these are reviewed, they are not the only consideration – and keep in mind at all times that the key measure of eligibility at all times is whether a person is beyond the legal limit for local authority care. This is fundamental. This article may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

Two Severe scores has been argued by CCGs at three Independent Review Panel (IRP) meetings as not requiring a CCG to agree to funding. But the CCG’s latest argument was ripped to shreds by the Barrister at the last one in 2015. They even tried to argue that one Priority score did not mean automatic entitlement on grounds that it is the eligibility criteria and their application against the evidence by the MDT that takes precedence over the domain scores…… Incidentally the last IRP chair wanted us all to describe the domain scores as levels. She felt that scores, as a word, implied a competition.

However, if people at appeals do not make the point forcefully, then the MDT’s incorrect behaviour would likely sneak in anyway.

I am so charged up now and ready to take them on after having read all these comments, and Chris here seems to know his stuff, and with the help from here I will also add to my dealings with the CHC. Thanks for such a wonderful site.

Thanks for your advice Angela. I will. I am on the ‘warpath’ after such a rude and humiliating meeting and my next steps will be to challenge absolutely everything and ask so many questions that they get absolutely sick of me. I know she is entitled to the funding after all my researches ( and my solicitor, who specialises in CHC cases thinks so too – last I spoke to him he was pretty angry at the meeting too) and I take heart from the many brave people on your site who also ‘never gave up’. Thanks also to Chris Ghallager whose advice I have found particularly useful.

Have been following your excellent advice/booklet etc for some time and 2 days ago my mum had a DST and was refused funding. They told us this on the spot, despite having not yet been to MDT. I & my husband and my specialist representative ( a solicitor) were present along with masses of uncontroversial evidence that she is eligible (previous funding having been withdrawn at a review which I didn’t even know happened, let alone attended!!) She has vascular dementia, virtually no cognition (lacks capacity & I am Deputy), a whole raft of psychological/behavioural/communication/drug/medication issues but is relatively low in physical symptoms.
They started their meeting (2 from CHC, one of whom said she was representing ‘social care’ – need to check this when I get the transcript, but surely not procedurally correct, and a nurse from the home) whilst we sat in another room waiting for them. They clearly had scored all the domains already and barely gave the grace to listen to any evidence at all – kept overriding everything with clearly irrelevant drivel i.e. they said my mother sat in the common room and played a board game. When I objected that this was absolutely impossible as she doesn’t have the cognition to do so they said..oh, oh maybe it meant a ball game!! Utterly bizarre. The whole time the 2 from CHC sat punching into the computer, though one was friendlier. The other commenced the meeting with an angry objection that she wasn’t informed I would be bringing a solicitor or my husband (who happens to be a pharmacist) – this is not true as I clearly told the CHC that they would both be attending – in fact my solicitor had rearranged the date to be present.
At one point they told me that the nurse in the home knew my mother better that I did. Needless to say I found this incredibly offensive as well as being patently untrue. They produced no evidence at all (charts, medical records etc) – merely relied on the anecdotal from the nurse who I have never actually seen interact with my mother on any visits – and disregarded our evidence. Lies were told i.e. that she had recently started on Risperidone (a potentially harmful drug to dementia patients such as my mother who also suffers severe hypertension) when all care records and 2 previous DST’s state she has been on this drug since Nov. 2012 without any psychiatric input or apparent review.
And most bizarre of all – after the meeting closed and my husband & I were reviewing the outcome outside of the care home they sent the nurse to find us and ask my solicitor if he had recorded the meeting!!

I would love to know whether anyone has come across this one before?

Needless to say I will be looking to an independent review, but am distressed even further by reading on your site that there is increasing evidence that even this is not necessarily independent any more.

Thank you all for the advice/shared experiences etc on this site and I would be very glad for comments/help/opinions on my experience so far too.

It sounds as though there has been a great deal of maladministration in your mum’s case, Gail: the assessors failing to put their recommendation to CCG decision makers (nurse assessors do not have the power to make the final decision in the actual assessment meeting); no local authority representative; failure to properly involve the family; evidence being ignored; verbal intimidation/aggressive behaviour by assessors; untruths; etc, etc. Families often report experiencing failings like these. Be sure to get a copy of the assessment notes and challenge everything in writing.

You have LPA and they did not include you in a full CHC assessment with a MDT so that they could stop funding? Was the Local Authority in on that assessment. If they were not, then the funding could not have been stopped lawfully.

Next: Two people from the same profession cannot make up a genuine MDT. The clue is in the word “MULTI-DISCIPLINARY” It sounds very like certain personnel that I am familiar with.

The first two IRP decisions (2012) I was involved in seemed to be very fairly made. The last IRP (2015) I attended was very independent. I asked the barrister that led it to abandon it on the grounds that the CSU and not the CCG had made the Eligibility Decision. (A CCG must not delegate that decision to anyone else). As such a decision had not been made and an IRP cannot convene to dispute a non existent decision. She suggested that we would lose nothing by going through the appeal. Throughout she was excellent and put the NHS personnel, present, to the sword. She stabbed me a couple of times too to be fair, but it was very obvious that she had done her homework. So I can state that to date I have not had a bad IRP experience.

Im delighted to report that Dad has been approved for CHC Funding and has finally left hospital for a nursing home. Thank you for the great advice on this site which really helped in preparing my submission to the panel

We are in a similar position to you – my mother in law has 1 severe, 3 highs and some moderates
She has severe Alzheimer and cannot walk (hoisted from bed to chair), and many bone diseases and double incontinence
We are at Appeal at the moment but they are trying to say its social needs and needs that are not Nursing
I have based our appeal on Coughlan but await the outcome – its likely to be ‘decline’ despite all the legal arguments put forward – if you have any advice please let me know – Iain

My father has advanced dementia and has been in hospital for 8 weeks following a UTI. He has been ‘medically fit’ for 5 weeks but waiting for assessment before discharge to a nursing home. WE had the DST meeting on Tuesday and it was agreed that CHC funding would be recommended to be ratified by panel. The discharge manager later decided, having spoken to her boss, that she was not recommending so it would go to panel as a split decision. I was told this yesterday & Panel meets on Tuesday. I want to add my thoughts to her report(which I have not seen) Dad scored 1 severe (for cognition) 4 high & 3 moderate needs. However his ‘no needs’ are breathing and ASC. He is doubly incontinent, unable to weight bear so spends most time in bed, occassionally being transferred to chair, he cannot feed himself and often refuses food & drink so has lost 4kg whilst in hospital. I get the feeling that as he has no necessary medical intervention needs they will say his needs are social & refuse CHC. However without his Alzheimers (a medical condition) he would have no need of the social aspects. Also he is to be discharged to a nursing not care home which surely suggests health needs. Any suggestions of anything I should add to my input tp hopefuly sway the decision and avoid need to appeal. Thank you

Alzheimer’s and other forms of dementia can give rise to a whole range of health and care needs in several of the domains assessed in the CHC process. So it’s not so much that Alzheimer’s in itself (as a condition) gives weight to your argument, but it’s more the resulting needs that count. And, as you’ve said, your father wouldn’t have these resulting care needs if he didn’t have Alzheimer’s. One of the best things you can do is to look in detail at every domain and pull together every single care need and health need that’s relevant in each domain, and pull all this together into a document. Plus, be sure to highlight how the issues of complexity, intensity and unpredictably come into play. You can also add anything that you feel has been done incorrectly during the assessment process – or any scores that you feel are wrong.

There does not seem to be any way that a CCG can refuse to fund a patient that is actually fast tracked by a doctor.
Although, I suppose that they could convene a full MDT very quickly to overturn such fast track action.

Last November 21st our GP said my father should get CHC for his care. The GP asked our Social Services for a ‘fast track’ assessment. However, the Social Worker didn’t do the initial assessment until February 13th and the decision it wouldn’t go further was made solely by Social Services. Our GP is not happy with this. I don’t understand why, when the NHS website says the initial assessment can be done by any ‘doctor, nurse, healthcare professional OR Social Worker’, my doctor or the District Nurse Team didn’t do the initial assessment. I have made a complaint to our local CCG team, but that have said since the initial assessment did not go any further to the CHC they can’t do anything. My complaint was why is it Social Services seems to wield all the power in doing the initial assessment? It seems insane that a non medically trained person with no access to medical records of the doctor/hospital/district nurse team should be in the sole position of filling in a complex form and then deciding whether it goes to the CCG or not for a full CHC assessment. The Local Authority having so much power seems to be convenient way of blocking access to the CHC full assessment. I think there’s something rather unsound about the whole process.

Our Mother’s GP has offered to write us a letter to help with her assessment. I’m sure I’ve seen a link to a suggested draft letter that can be prepared ready for the GP so that you make sure it gives your case the best support possible. Has anyone else seen this?
I too really appreciate the generous help given on this site and am preparing to join those that are battling for NHS Funding even though my mother has been paying for care since 2008 and has a bill for £80,000.00 from the LA which needs to be paid on the sale of her home.

In line with your GP observation: We had a consultant that was contacted, after a MDT assessment by the MDT. (He had treated my mum for over 10 years). It was in regard to my mother displaying Altered States Of Consciousness (ASC), She always suffered migraines. Even before going to live at the home she had regular vacant episodes and sweats and tremors. The home was famous for not reporting incidents unless they were very serious and obvious.

The Consultant psychiatrist wrote to the MDT that it was more likely that an attentive family member would see such things than a nurse or a busy carer (we had 20+ diary entries) and that he would generally take their observations and descriptions and apply them to a poorly cognitive dementia patient.

He also wrote that in his opinion and with his knowledge of the patient, any decision to remove funding should be postponed until the matter (the nature) was completely understood.

If you have experience of this process, you know exactly what the MDT did: They pretended that nothing existed to indicate a Primary Health Need. They just cancelled the funding because, as they stated much later, the need was not diagnosed. Diagnosis of course, plays no part in the process.

At MDT we had reported only the most obvious incidents from the previous 4 months and even then from only the three hours that we would be there on any one day.

Over 4 years of CHC assessments my mum had received “no needs” as the score within the ASC domain, and yet she was then diagnosed with epilepsy. Such scores were maintained by virtue of dismissing us and hiding expert testimony.

Of course doing that and ignoring a Consultant’s opinion has never been punished. It is the case that the DST is supposed to be completed so that it can form the basis for the patient’s care plan….. regardless if it is the NHS or the council that provides that care. Of course doing that properly would often provide the evidence that would indicate that the matter was more complex intense or unpredictable and indicate that a need for funding existed.

They chose to hide the Consultant’s concerns and so investigations into the vacant episodes etc. were not undertaken until very much later. My mum collapsed, hurt her head and arm, and required emergency hospitalisation, a long stay and several follow up visits to Consultants.

So you can see how much confidence I have in including even a very specific expert’s testimony.

Many thanks Angela. The nursing home manager has (on our behalf) written to the LA Head of Social Services (rather than CHC) forcefully advising procedural and assessment flaws. A welcome development! Sadly, the letter withdrawing funding has already been issued so we’re off down the appeal road. Good to know of the local dispute resolution meeting possibility. Thanks again for your valable insight.

Stuart – I don’t think there’s any harm in setting out in writing your concerns about how the review was handled and sending this to the CHC team now. If it stops you having to go through the appeal process, that would be good. If the decision is ‘no funding’ the CHC team should offer you a ‘local dispute resolution meeting’ where problems can (in theory at least) be ironed out. However, by raising issues now and highlighting flaws in the process followed, you may be able to get the review process repeated, this time properly, and avoid going to appeal. I’ve seen this work before when assessors have realised that mistakes in the process have been identified.

Any views on contacting the NHS MDT assessor before the formal advice of non-CHC eligibility? We have been verbally advised that my father is no longer eligible but, having read details here (great website thank you!), I feel they have breached/ignored the definition of healthcare need. My father has PSP, gained fast track funding but is now considered to have “just” social care needs….
Am I better to raise this point now in the hope of influencing the final, formal decision or should I wait and go through the appeal process. I’m concerned that, by raising it now, I lose some “ammo” for the appeal.

Jane – you’ve raised in interesting point about the solicitor just looking at the scores. Not all solicitors are skilled in this area, and it’s vital to find out what knowledge and experience any given solicitor has in Continuing Healthcare. A good solicitor in this respect can be invaluable. There are also many who know a bit about it, but do not necessarily know enough to add real power to your case.

Always remember the local authority legal limit for care, as established in the Coughlan case, which is routinely ignored by NHS assessors. It is still just as valid today as it was in 1999 at the Court of Appeal.

Hello…….the question that was asked is a question no one can answer and the outcome is based on clinical judgment of the social worker and nurse assessor. The scores on the dst cant be used to determine eligibilty as the dst cant decide the outcome. You need to consider the 4 key indicators nature, intensity, complexity and unpredictability. The framework does allow for a joint funded package where the nhs pay up to 50% of the care with social care or self funding picking the rest.
Try and apply the framework to learning disabilities and its a whole different ball game since the st helens ruling !!

You said, “the dst cant decide the outcome”. Yet it is required to be completed and a recommendation made by an MDT that cannot be disagreed with by the panel or the CCG managers except in limited circumstances.
It is also what an Independent Review Panel will use in conjunction with your testimony. Likewise the Ombudsman.

What is ironic is that the disagreement part above, relates to the panel alone. Yet I was recently told in a two standard letters that I could not disagree with the MDT, it’s DST or it’s recommendation when I made the local appeal. So what grounds could I use to appeal then?

All previous DST copies for a patient are “expected” to be available at subsequent reviews too. But I have never seen one used in six years.

The DST is important. It contains the evidence that informs the decision. The decision can only be wrong if evidence is incorrectly recorded and then applied against the criteria and the legal test of the LA’s ability to provide the care.
Or the procedures used in it’s completion were wrongly applied.

The 2009 National Framework stated:-
“The Decision Support Tool, combined with practitioners’ own experience and professional judgement, should enable them to apply the primary health need test in practice, in a way that is consistent with the limits on what can lawfully be provided by an LA, in accordance with the Coughlan and the Grogan judgments.”

This legally required test of the LA’s legal ability to provide care is often totally forgotten in favour of just the judgement that is permitted in confirming the criteria of complex or intense etc. They fail to obey the following:-

“3.3 […] a person should be considered to have a primary health need when the nursing or other health services they require, when considered in their totality, are:
[…(a) …. irrelevant (here), subsection regarding accommodation…] ….OR

(b) of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide.”

I believe that the NHS cannot tell the difference between and & or.

That legal test established by case law, predates the creation of the criteria. Nowhere are the criteria and their use stated to be legally required as the test of the LA’s remit to provide nursing care is.

It must be remembered that there is apparently no law that creates a duty to establish these criteria yet alone apply them. The Judge that mentioned them did not appear to put a duty on the organisations to establish that practice. As such it appears to be guidance created by Ministers that has become law only in the minds of it’s practitioners.

The 2012 Nat Framework states:-
“35. There are certain limitations to this test, which was originally indicated in Coughlan: neither the CCG, nor the LA can dictate what the other agency should provide.
Instead, a practical approach to eligibility is required – one that will apply to a range of different circumstances, including situations in which the ‘incidental or ancillary’ test is not applicable because, for example, the person is to be cared for in their own home. Certain characteristics of need – and their impact on the care required to manage them – may help determine whether the ‘quality’ or ‘quantity’ of care required is more than the limits of an LA’s responsibilities, as outlined in Coughlan:”

It then goes on to the criteria of complex etc.

If this is read carefully, the legal test is required in all cases. Yet the 2012 framework when poorly read allows practitioners to deny the fact. It is required in all cases because it removes the care need from the remit of the council to provide care at all. Regardless of if accommodation is required by the patient.
Yet the framework records, without there ever being any legal challenge to change the Coughlan decision, that there are “situations in which the ‘incidental or ancillary’ test is not applicable” at all. Which is true but the way that the assessors operate is to simply forget subsection b.

Of course that dishonesty then opens the door for the NHS/LA to fudge the issue with their application of often dubious “personal opinion”, (not professional judgement!), as I was recently told by an MDT, was permitted instead of following any framework decision making rules at all.

In regard to the initial DST used to award funding; if scores are achieved in the initial assessment and funding is awarded, then if scores are in later reviews, raised or indeed stay the same, then it seems perverse to remove funding from a patient that was previously accepted by the LA as being “beyond their legal power to provide”. That is why the DST copies are supposed to be present at subsequent reviews.
Ergo the DST is very important but the framework seeks to minimise it’s value along with it’s evidence for obvious reasons.

I feel like I’m going round in circles trying to find supporting evidence and a definitive example in law to confirm to CHC funding assessors & appeal panel members that my mum has a primary health need. When quoting the Coughlan case I was shot down, being told all the facts of the case are not in the public domain. When I recently contacted a solicitor he seemed to merely look at the scores on the DST. In the recent decline letter from the appeal panel I was told my mum has a primary social need with her health needs being ancillary, although in the same letter the panel acknowledge she needs access to 24hr nursing care. I have now requested an independent review. Any advice would very much be appreciated.

Hi Jane,
There is no such thing as a “Primary Social Care need”. The decision is if your loved one has a Primary Health care need. A Primary social care need if such was defined, would disallow any funded Nursing Care Component that the NHS might have offered you instead of CHC funding and if they did offer you (usually as consolation to get you off their back re: CHC funding), this then shows that your loved one’s needs also include nursing care.
So their needs cannot even begin to be described as a “Primary Social Care Need”.

Coughlan is a well publicised court case and was carried out in the Public Courts. It is entirely in the public domain. So they have lied to you in a financial matter. That borders on being fraud.

Coughlan is also the very reason that a National Framework for CHC funding even exists at all. Along with the 2009 (year), changes that were designed to include the Grogan (also full in the public domain), case that caused the need for changes.

As for the scores within the DST that you hold. Were you led to believe at the assessment, that your loved one qualified?

If so then it is the CCG or it’s Commissioning Support Unit (CSU), that has altered the scores. They are not permitted to do that.

Ask the CCG/CSU for every electronic or paper copy of the DST and any notes made at the time of the assessment and any alternative copies made…. stored on any server or laptop that was involved in the assessment. This is your loved one’s personal data. You have every right to access it as a representative. Or if they have cognition and the ability to make choices, then get it sent to them. They have every right to see data that is held about them. Especially electronic records that are used to make decisions. There should be no charge for this data because it forms part of the evidence in the refusal of funding.

I did just that immediately after an assessment when it became apparent that our assessors were not making a written copy of the DST, but trying to type the assessment DST and also another to type what was allegedly said.

I received 5 copies of the DST and 6 copies of the notes taken. I cannot be sure that there was any influence by the bosses to alter these but I do hold older written documents that show that the panel created their own version of the assessment (never having met the patient), and stated that it was the evidence of the assessment. Stating that it was the evidence that should be appealed if we disagreed with it.

Panels are famous for nonsense such as “she needs 24 hour nursing care”. That is usually because someone has badly edited the original records and left damning information in.

The other good one with us was “The Panel have reviewed MRS XXX”s Very Complicated needs and have concluded that her needs are not complex or intense”. Thereby confusing the unedited facts with the usual formulaic wording that they use to try to deny that CHC funding is required.

They are slack and foolish when using word processors to alter and edit what was discussed so that it appears that very little evidence was even available for discussion. Sometimes they slip up and it more than apparent that they have poorly edited the facts.

It might well be the case within an NHS hospital. I would imagine that certain procedures for lower level staff are proscribed within a hospital.
However I give myself deep muscle injections with the consent of MY GP. My father used to give my mother PRN medication at home (PRN=as required), based upon his observation of her needs and his thorough understanding of the very limited range of med’s given to him for his wife’s care.

Although your manager should be aware that a Nurse or Doctor can delegate or instruct another person to carry out their “higher level” function on their behalf: Their responsibility for any resulting poor outcome depends upon if they delegated to a qualified person or instructed an unqualified person to do the task. The last makes them responsible for any failure….. if you get my meaning.

Exactly I agree with angela,it does not matter who gives the care.
My father had parkinsons and could not do anything for himself, they are trying
to say he has social needs and not a health need, if he did not have parkinsons. He would be able to do things for himself. I am still fighting them.
it nearly got to IRP but they sent it back to local CCG to do it all over again as there were so many problems with the paperwork, so now waiting for the checklist to be done again. the first one was done dec 2011, it has taken this long and sadly my father passed away nov 2013. So I am still going to fight on for him!!!

Wishing you well with that. Funding assessors passing off health needs as social care needs is the root of most problems with Continuing Care. My own experience indicates that many assessors deliberately ignore the guidelines in that respect.

Even better Angela when they ignore the wording within the DST domain scoring pages that actually matches their written findings. Then they say that they are using their personal opinions to make the scores. When challenged they suddenly realise their slip up and then say “our professional judgement” instead.

The old DST and framework called them something like carefully chosen descriptions of health care needs. I think that has been altered since 2013. MDT’s are still under instructions to use them if they describe the need.

For example Drugs: Severe ends with issues regarding concordance with medication. If a patient has severe cognition scores then they cannot be in concordance, (which DST defines as an agreement with a care giver).

Therefore any severe scored non cognitive patient must have a severe medication score even if only aspirin is covertly administered.

That is when the MDT tries to use it’s judgement instead of the wording and then awards a score that is often contrary to the wording of that lower domain score.

Good for you still fighting I hope you get somewhere, when my Dad died with Parkinsons after nhs blunders I didn’t have the strength. We are left with Mum who has FT Dementia so we are saving the fight for her xx

Sometimes a better way to think about this – and argue it – is: 1) to remind assessors that it doesn’t matter what the qualifications are of the person delivering the care, i.e. it doesn’t have to be a nurse; and b) to focus on the actual scoring descriptions for each domain in the Checklist or DST – and to show how the person being assessed matches specific descriptions and scores.

There are many obvious differences between social care and nursing care but, there are many ‘grey’ areas that need clarifing. I.e

Giving an injection = nursing care
Giving medication (tablets and liquids) = nursing or social care ??????
Feeding a patient who is unable to feed themselves = nursing or social care??
Dealing with a patient who is doubly incontinent = nursing or social care ??

There must be many other ‘grey’ areas as above and it would be very, very useful to have a complete list of specific examples made up, so as to argue in a CHC which is social care and which is nursing care.

Hi D. Walton,
Everything is made to look grey by the authorities. It also seems now, that both the NHS and the Council are in it together. Care homes are slacker recently because they now make more money from higher fees if the resident is forced to self fund.

I wont say it is simple but…..read the definitions and the rules:-

2.2 In general terms (not a legal definition) it can be said that a social care need is one that is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society, protecting them in vulnerable situations, helping them to manage complex relationships and (in some circumstances) accessing a care home or other supported accommodation.

2.3 Social care needs are directly related to the type of welfare services that LAs have a duty or power to provide. These include, but are not limited to: social work services; advice; support; practical assistance in the home; assistance with equipment and home adaptations; visiting and sitting services; provision of meals; facilities for occupational, social, cultural and recreational activities outside the home; assistance to take advantage of educational facilities; and assistance in finding accommodation (e.g. a care home), etc….”

Everything you mentioned is what would be carried out within a hospital free of charge or just as easily in a Nursing Home or your own house too. (I give myself prescribed deep muscle injections).

In addition, from the rules above:-
providing assistance with activities of daily living
protecting them in vulnerable situations
(in some circumstances) accessing a care home or other supported accommodation [such as NHS paid rehab’ units]
advice
visiting and sitting services [there are hospital visiting charities. NHS also provides long stay accommodation for families].
provision of meals

These are all functions carried out by the NHS without charge whilst the patient is within free accommodation. That forms a precedent which would be hard to dispute in a court but how many of us can afford to do that? Although if you blew the lot and lost, at least the council could not get their hands on it and the reason for the expenditure could not be considered to be hiding or just spending the cash. (Lawyer confirmed that last bit).

Now. Do any of the following services provided by social workers and/or the nursing home actually apply to your loved one?
maintaining independence
social interaction
enabling the individual to play a fuller part in society
helping them to manage complex relationships
advice
facilities for occupational, social, cultural and recreational activities outside the home
assistance to take advantage of educational facilities

I know that none of them can apply to anperson without cognition, such as my mother.

Just because the Council can supply this multitude of services does not mean that your loved one is using or can actually use them. (My local bus company runs loads of services, they are useful to some, no doubt but I don’t use them at all. Ergo only those that have the need to and actually use those bus services are required to pay for them.)

Removing the listed items from the issue leaves very little that the NHS would not provide for free along with the free accommodation within an acute hospital bed.

The CHC rules are about discovering health care needs, (all needs, in the round have to be assessed; even a fit person has to eat), whether they are because of acute or chronic illness, regardless of location or who provides the care.

I asked a nurse recently that if my father in law (no legs, Brain injury, Mild Dementia, Double incontinence, amputation bone coming through stump etc.) was seen by her in his own home and he just said “help”, who would she call to provide that help?

Would it be the Council or the NHS? That would be a better marker for the needs test.

The argument is actually about paying for the accommodation. And if the care needs are considered to be ancillary needs then I would argue, that when the NHS starts providing acute care to patients without providing free accommodation then they can refuse to provide free accommodation to patients requiring chronic care.

Care needs for one group of the population (such as drug or alcohol addicts), requires free accommodation but for another group free accommodation is not required. Is that discriminatory? I would suggest that an addict meets the social care descriptions far more closely than my mother does.

Here is another thought. If it is illegal for the Council to provide services and they accept that is the case, on the first assessment, then if there is virtually no change subsequently (almost identical scores or even raised scores), they must be breaking the law to accept the costs and provide care that they had previously recorded was beyond their legal remit to provide.

We have always refused to pay or contribute for two relatives. The NHS have always backed down on the strength of our many arguments. (27 months delay before IRP, last time).

I’ve spent many an hour trying to decipher this… and actually in the simplest terms I believe that it comes down to this. A social care need would be the need for Assistance, http://www.oxforddictionaries.com/definition/english/assistance
Social care is underpinned by the National Assistance act, the clue being in the title. (though shortly to be the Care Act). The national Assistance act would be called the National ‘doing it to or for you’ act if that was what social care was intended to be!

So when considering the care needs of a person, my view is if they need to have things done to them as a result of their illness or disability, which includes personal care, feeding as well as the obvious treatments, medications etc. Then they most certainly have healthcare needs as defined by the National Framework. It is the totality of these care needs which then need to be considered and how those needs are managed in order to decipher eligibility for CHC Funding.

Hi Adele,
That is something that I try to do…. use the dictionary definition…. However, above, I wrote the framework’s definitions of the social care needs description.

I also made the point that many of the facilities described as providable by a local authority do not in fact apply to some one with Alzheimer’s disease in its more devastating stages.

It is ironic that at those stages, the NHS then tries to make it look as if the dementia patient has even less need of their services and assistance too. Perhaps they are less mobile or have lost their aggression – neither of which makes them any more able to use the services listed as social care by the local authority.

There is a definite gap between the definitions of healthcare and social care when applied to those that have dementias in particular. It cannot be the truth that patients who cannot use the described services provided by the local authority also require less input from the NHS.

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